Saturday, July 28, 2007
Now, when I think of praying for health I am interrupted by the thought: "But how do I know that being sick isn't exactly what I need right now?"
When I think of praying for happiness I am reminded that happiness is a choice, not something done for me or to me.
When I think of praying for a certain thing to go my way, I stop in my tracks. How do I know that what I am currently desiring is the direction I should take?
What I have learned is that there are only two things I can really pray for: strength and clarity. Strength to endure my physical difficulties and find my way back to inner happiness. Clarity to help me point my feet in the right direction.
I quit my job this week. I am going to try and make a living as a public speaker. I am excited and scared. I found myself praying a lot!
Today I pray that doors to my greatest destiny will be unlocked and fly open so that I will simply have to walk though.
I pray that God guide me to the places I did not even know I needed to go.
I am grateful for all I have and ask that God will help me become all that I am capable of being.
Friday, July 20, 2007
It was 1999 when I left San Francisco to head back east for my transplant. For various reasons, I never went back with new lungs. In 2002, when I was diagnosed with Chronic Rejection (or "Chronic" as the cool kids say) I was surprised to find that not returning to SF was my biggest regret. When I lived there, I was struggling for air and could barely get around, except by car. I had dreams of walking up those steep hills, full of life and breath. I loved that city like it was a person and missed it dearly. When I was blessed with another transplant I vowed to make that one dream come true.
Since my 34th birthday was approaching, I decided this would be the perfect time. I booked my ticket and packed my walking shoes. When people would ask me what I was going to do when I got there, my response was "walk up a hill". Admittedly, I did not have lofty goals.
The first morning in SF, I woke up early and set out to meet the day with my best friend at my side. We headed for a neighborhood that I had spent a lot of time in and wanted to rediscover. We walked up the first big hill and I was met with a surprise. It was not fun at all. Yes, I could do it, but I still huffed, puffed and felt my calves cramp up. (Yes, I am very out of shape!) I had no feeling of accomplishment. No feeling of pride. I just wanted to avoid those stupid hills at all costs.
When we finally got to the neighborhood, known as "The Haight", I couldn't believe my eyes. It was dingy and lifeless. What I had remembered was a world of brightness and vibrancy. It was none of those. On top of that, I felt like I had never been there before. It was foreign to me. While I could remember the street that was going to cross at the next block (confirmation that I had, in fact been there) the fact remained that I felt like I was in a completely unfamiliar place. It did not feel like home, as I thought it would. It felt only like a distant, foggy dream.
I began to feel a twang of panic in my chest. Nothing could have been farther from my expectations of what this trip would be like.
It occurred to me that, as I walked through this strange and not-very-wonderful place, that my dream of walking up a hill was merely a metaphor. What I was seeking was not a brisk jog to feel my lungs expand, but a palpable knowledge of how far I had come. Tiffany in 1999 and Tiffany in 2007. How much had I changed, grown? I thought I could find that in the compare and contrast of a walk up a San Francisco hill.
While I did not find the proof of my transformation in exercise, I did find it other places. I found it in nooks and crannies of the New San Francisco. The place I discovered in 2007, not the one I exaggerated in my mind for 8 years. That place, the one in my mind, does not exist. I know that now and it is a relief. I can let go of the idea that if I lived in California everything would be perfect. I see now that where I do live is just fine. I also see that I can walk up those hills anywhere. I look forward to carrying that understanding with me, even in the flat world I currently reside in.
All in all, it was a wonderful trip and nothing that I thought it would be.
PS. Nothing to report about the book. The editor is still working on it. I do plan to keep you all in the loop, however, as things progress!
Wednesday, July 11, 2007
On the other hand, I feel obsessive, like the book is incomplete and I should hold onto it and rewrite most of the chapters! I don't think I will ever feel like it is good enough. I suppose I should just get used to that feeling....
On another note...I will be flying to San Francisco on Friday. This is a major big deal for me. San Fran is my favorite place on earth. I lived there while I was waiting for my lung transplant and have not been back since I left 8 years ago. I have never had the joy of walking the hills of the Bay Area without struggling for breath. This trip will be a testimony for just how far I've come and just how far I can go...I will also be turning 34 while I am there!
Here's to the next chapter!
Sunday, July 8, 2007
After my second transplant, I was working to find my place in the world. I was interested in veterinary medicine and took a job assisting a mobile veterinarian. Things started out well but quickly deteriorated. It is my belief that once he discovered I was not interested in being his lover, he began to lash out and try different tactics to get rid of me. One of his tactics proved to be unbelievably effective.
For reasons unknown, he had been angry with me all day. Out of the blue, he started interrogating me about my life. I relayed some of my history: both work and health related. He drilled down harder and harder, pressing me to lay out my “accomplishments”. The difficult truth was that there were few that were in any way measurable. He concluded our talk with a sentence I will never forget: “So what you’re telling me is that the only thing you’ve been able to achieve in your life is to survive.” A cold way of putting it but, at the time, I could only agree.
I left his van that day very broken. Out of his spite and unkindness he had spoken the words I never dare speak to myself. He had said the thing that I always imagined people secretly thought about me. My life had been a waste. I was devastated.
He had successfully gotten me to quit working for him. It is rumored that he now has a young assistant willing to oblige him in the ways I had refused.
When I was dying, there was not much left of my life. I had no job and not much of a social life. At first, I was very concerned that I was not contributing to the world. I had no purpose.
In time, my perspective changed. I saw the world around me with new eyes. Watching those I love run around chasing balls for a job they hated seemed so futile. Seeing those before me hate themselves for reasons unclear to anyone else seemed tragic. Witnessing people value their money more than their souls seemed ludicrous. I was living in a different dimension in which inner peace trumped all other earthly goals.
I had reached a level of living similar to monks in a monastery. I saw only the preciousness of life and wished that others would do the same. I was no longer concerned with who I wanted to be or what I wanted to do. My purpose became to be the best human I could be and I enjoyed exploring my internal playground. My contribution to the world, it seemed, was to be and what I did meant little to nothing.
The dying process has proved to be an extraordinary teacher on the value of being rather than doing. What I have found, however, is that there is value in living both ways.
While there was great peace in being a monastery monk, striving only to be, that existence is hardly sustainable once one leaves the confines of the monastery walls. Once I was well again, I was back in the marketplace, working for money to live, shopping for that which I required and living an altogether more complex daily life.
I have been tempted to find more value in the world of the monastery monk. It seems more admirable and closer to God. However, as I walk through the marketplace I have things that I want to do to improve the world. I have things I desire to do to make an impact. There is value in this as well.
Success is not easily definable. It can be found inside and out. While I am able bodied, I will try to carry with me the lessons I learned in the monastery and use them to the greatest benefit of my marketplace.
I got a horrible phone call at the vet clinic today. A woman was requesting information about cremation and burial services for her two pets because they had both died in a house fire while she was at work. It was a slow burn so they died from smoke inhalation. One was a puppy and one was a 12 year old cat.
Later in the evening, she came in clutching the two animals to her. They were wrapped in a fireman’s sheet and reeked of smoke. She was covered in ash and barely coherent. We went in a room and tried to talk about how she would like the remains cared for. Her level of shock and grief was so extreme it became obvious to me that we would not be making any decisions that night. I asked her several times if I could take the animals from her and she refused. She could not let them go. When she finally handed them to me she had explicit instructions about how to carry them and to never, ever separate them from each other. I agreed and she kissed them goodbye one final time. Through her tears she confessed that she took all the responsibility for their death and she wished she had never adopted the puppy in the first place; if she hadn’t he would still be alive. Of course I told her it was no one’s fault but I could see the fortress of guilt and self-loathing in her eyes. Nothing I could say would ever change the fact that she would blame herself for the loss of these two innocent lives.
After she left, I broke down. It was certainly the saddest case I had handled and I felt so overwhelmed by her pain. I couldn’t help but compare this exchange with the many other clients who had lost their beloved pet to illness and often euthanasia. This was so much more acute and traumatic. I found myself, once again, appreciating illness and all it has to offer.
We all have to die in this world. If I had a choice, I would much rather have a terminal disease than an unexpected departure. Illness is hard, but there is much to value in the opportunity to say goodbye.
My heart goes out to the woman, her family and those two precious animals. I only hope that she will someday forgive herself and find peace.
Friday, July 6, 2007
Well, just when I thought I had done it all…I got sick this week with something I had never experienced. I had a really high fever, my joints ached so bad I could barely walk and I felt generally crappy. I went to the ER and, of course, they admitted me. The usual “we don’t know what you have but we’ll treat it with IV antibiotics" began. I was hoping they would figure it out quickly because I have my big fundraiser coming up and I have no time to spare. No such luck.
When the resident came in and told me that I was scheduled for a PIC line placement, I had my normal reaction: tears and trembling. I fought the decision but with no success. Soon, I was being wheeled down to my least favorite place in the entire hospital: Vascular Radiology. They put my gurney up against the wall and I sat there like a bag of discarded garbage for what seemed like hours. No one spoke to me, no one even seemed to know I was there. Despite my efforts to tune it out, I couldn’t help but hear the conversation of the many people lollygagging in the hall. Most of what they had to say revolved around annoying patients and how cool they were for being doctors. It was a level of stereotypical doctor machismo that became almost comical. If it hadn’t been for the fact that these were the people about to thread a mile long catheter through my arm and up to my heart, I might have laughed.
At one point, my IV machine started beeping but it was ignored by everyone who passed by. I looked down to see that there was a baseball size lump under my skin: my IV had infiltrated. It really started to hurt. I began to call out for someone to turn it off but, still, I was invisible. I literally had to reach out and grab someone to get their attention. They shut off my IV and eons later wheeled me into the room that makes me cry.
It freaked everybody out that I was crying before I even got on the table. They didn’t understand what the big deal was and I had learned it was pointless to try and explain. I got on the table and they began to prep me for the procedure. I had a plastic sheet covering most of my upper body, including my face. It was quite claustrophobic. They strapped my arm down to a board at a strange and uncomfortable angle. The began to wipe me down with very cold betadine. It was everywhere. The cold combined with my fever sent me into a shiver-frenzy. I was miserable.
It was at that moment that it dawned on me: this would be terribly uncomfortable if I wasn’t sick and scared to death. Add to it all of my maladies and it was downright awful. At that point, a phrase began to repeat in my head; “The things we do to sick people”. It really is astounding what we make a person go through at their time of greatest dis-ease.
In the end, I was diagnosed with Rocky Mountain Spotted Fever. The treatment? Oral antibiotics. The PIC line stayed in a total of about one day and then we pulled it out. I doubt anyone besides me thought much of the needless pain and torture. The things we do to sick people!
Thursday, July 5, 2007
If you would be willing to write one to three sentences on why you think this book is worth while, that would be so awesome!
I'll need to use your name, your title and your city and state. I'm looking for doctors, nurses, family/friend caregivers and patients.
Oh yea, if I use your quote, I'll send you one of the first copies, hot off the presses, for free. Thank you!!!
Wednesday, July 4, 2007
One of the hardest parts of illness is the helplessness that comes with being taken care of by loved ones. In a dark time, this helplessness can manifest itself as resentment. In an enlightened time, this helplessness manifests as an overwhelming gratitude for a debt so huge it could never be repaid. This gratitude easily transforms into guilt.
The only way I have been able to let go of my guilt is to stop believing that it is within my power to repay and reward those I love for all they have done for me. I wrote this poem/prayer in a moment of hopeless guilt as a way to free myself of the weight of my gratitude.
To my beautiful parents
I have decided to hire an editor and self-publish. While I enjoy writing this book and it has been a great experience, it has never been my goal. This book has always been a vehicle to get me more talks and higher billing. Giving speeches is my true passion and you need one of two things to make a career of it: a big degree or a book. I don't have a big degree so...a book it is!
I don't want to spend precious time waiting for agents and publishers to pick me and then wait for them to get the book out. I want it asap! That is why I am going to self-publish first and look for a book deal later.
I have hired my editor and she will start the overhaul in a few weeks. In the meantime, I have to finish up my last few chapters, fix up a few and organize the format. If all goes well, I will have a book out by the end of the year!
I'll keep you posted! :)
Dating isn’t easy for anyone. Proof of that can be found simply by visiting the “self-help” section of any bookstore! Whether we are trying to figure out the “rules” of dating or understand the differences between “Mars” and “Venus”, there clearly are a lot of people in need of guidance on the topic. Most of us reach a point in our lives when we deeply desire a partner and rarely have a smooth journey in finding, or for that matter, keeping one.
Acknowledging the already challenging nature of love relationships, it is no wonder that adding the difficulties of illness into the equation can create another level of complexity. As a young girl seeking love, I made many mistakes. As a young CF girl seeking love, I made many excuses. Using trial and error as my guide, I continued to make mistakes and excuses well into adulthood. There aren’t many role models out there for such a situation and I fumbled desperately in the dark.
A confident person in most of life’s arenas, my “relationship self” never seemed to match with the rest of me. When talking to boys, my focus was on saying what I thought he wanted to hear. All I cared about was getting him to that like me and become my boyfriend. It never occurred to me to question whether or not I liked him! In relationships, I was submissive and often was talked down to and told what to do. Inside, I knew that wasn’t right but I couldn’t bring myself to “rock the boat”. Deep down, somewhere along the way, I developed an unconscious belief that I had to trade his bad behavior for him having to “put up” with my illness. I was often in a state of vulnerability and weakness. That state of mind led me to do things I wouldn’t have done had I been true to myself. It allowed me to be in verbally abusive, long-term relationships and to hang on to those relationships out of fear of never finding better. Many women have walked a similar path that I am describing, but Cystic Fibrosis was a large driving force behind why it was so difficult to change these detrimental patterns. There was unaddressed anger and sadness there and I often looked to men to make me feel alright about my disease. That never worked! With some counseling and a determination to be loved the right way, I eventually found my way out of that confusing maze.
In 1998, I was living in beautiful
We dated for about a year, all the while my health was deteriorating. When I got the news that it was time to move back east to wait for my transplant he was very supportive. He owned his own business and arranged to take long leave of absences every few months. He was going to stay with me and be there when I was healthy and back on my feet.
He came to visit me once. After that, the strange phone calls began. We argued and I cried. He wasn’t making much sense and I couldn’t quite figure out what was happening. In the end, I learned he had found someone new and he finally broke up with me. It was a messy brake with lost of calls and wavering. My heart was broken.
All the signs were there, had I chose to read them. When I stopped being able to go out dancing he wondered how he could be with a girl who couldn’t “give him what he needed”. He was an ex-drug addict who had replaced cocaine with a girlfriend. That girlfriend happened to be me but I was easily exchangeable. When he traded me in for a newer model, it made sense but it hurt like hell.
I felt abandoned. I was in perhaps the most scary and vulnerable position of my lifetime and I had been left behind. Worse than that, I felt ashamed. I blamed his decision to flee on my weakness. Worst still, I felt his behavior was justified. I had been dumped by someone I loved and I felt like I deserved it.
When I look back, I feel sad for that devastated girl who cried herself to sleep when she should have been saving her energies for the awesome journey that lay ahead. I feel sad for the girl that let a man make her feel invalid because of an illness beyond her control.
After the transplant, Joe came back. He wanted to move to the east coast and “make it work”. Apparently, things were not going well with his current female obsession and he was back on drugs. I laughed and said “too little, too late”. There was surprisingly little satisfaction in knowing that he still had feelings for me. His actions and words had caused me so much pain, there was nothing that could right that wrong. I never spoke to him again.
After Joe, I faced my illness alone. I had friends and family, of course, but lacking that one special person with whom I could curl up to and tell my inner most thoughts. I never lost the desire to have this person and went on some pretty desperate and pathetic dates hoping for “the one”.
I dreamt of the man that would hold my hand as I cried and said I didn’t know how I could do this anymore. I longed for the one that would help me when I was sick and love me for who I was. I daydreamed about looking into his eyes as I drifted off to sleep before the transplant and awoke to find him by my bed afterwards.
What I learned was, an oxygen tank can put a damper on dating. I never met anyone who could handle where I was in my life. I doubt that I was really in any place to start a relationship anyway. All I knew was that I was lonely and wanted the comfort of a lover’s arms.
I went into surgery without staring into anyone’s eyes and awoke to find only my wonderful family and friends. Along the way, I found out that I could give myself most of the things I was craving from a man. I learned to comfort myself. I began to understand what it meant to love yourself and “be whole” without a partner. I never stopped wanting to find true love, but I did discover a self-love that allowed me to feel much less alone. I began thinking of myself as “my own best friend”. I know now that my loneliness served a great purpose and has made me capable of being a full person in a relationship.
When I was diagnosed with chronic rejection, I had been dating David for a few months. Neither of us really knew what that meant so we blindly continued on. We had been together about a year when we reached that place many couples do: move forward or brake up. Perhaps with my bulldozer-like charm at the core, we chose to move forward and move in. I packed my things and we found a cute apartment in his town. To complicate things, the day we moved in, an oxygen tank was delivered and I became dependant on tanks and tubes 24 hours a day.
Over the next year, my health continued to fail and our relationship crumbled from this inside out. Had circumstances been different, it’s doubtful we would have stayed together. We so rarely saw eye to eye and had a hard time talking through our differences. To his credit, David never left. He never ran from his terminally ill girlfriend, no matter how poorly we were getting along. As for me, I felt trapped in my unhappy relationship, tied down by my own illness. Where could I go in that state? It was either stay with David or move in with my parents. At 30, moving back to my parent’s home would have been equally difficult.
To deal with the situation, we resorted to staunch pragmatism. We made deals about everything. He had a schedule of when he could do the things that drove me crazy and I had my schedule for things that drove him crazy. We had a list of topics that were off limits. We designed ways to fight that would honor my physical limitations. Our coping mechanisms were quite intricate.
I don’t mean to say that there was no love there. I respected David for his ability to stand steady in the storm. He admired my courage in the face of death. We loved each other but we weren’t meant to be together. Had I been healthy, our relationship would never had lasted so long.
In the end, he was with me through the transplant and the following six months. Because of his willingness to stick around, I felt I owed it to him to see if we could make it work. I imagine he felt that he had invested so much he wanted to see if things could turn around now that I was well.
Eventually, I moved back to my original town and he stayed behind. I will always be grateful for all that David did for me. I will also always remember what it felt like to be sick in an unhappy relationship. Just because they stay with you doesn’t mean that it’s “the one”. With my health, I don’t have the luxury of dating people who aren’t a perfect match. Someday, I’ll get sick again and I want the one by my side to lift me up, not tie me down.
In my early twenties, I had followed some self-help advice and written a list of the qualities I wanted in a mate. Over the years, I revised and rewrote this list. After David, I threw my list away. I decided my dream man was merely that, a dream. I broke down my childish fantasies and let go of my secret fairytale wishes. It was time to face reality: nobody would ever meet my specifications.
When I met Jason, it was just another date. We had met online and he had interesting things to say but, then again, so did the last few guys I met. The crazy guy, the married guy and the weird guy all sounded good in cyberspace. I was becoming numb to the whole process and when I entered the wine bar where we would meet, I expected nothing.
The conversation flowed easily and we quickly bypassed the small talk. It seemed as though our perspectives meshed on every topic and I was amazed at his ability to articulate his ideas. By the end of the night, I felt as though I had known him for years. I was giddy with wine and good conversation but patiently waited for the skeletons to come climbing out of his closet.
On our next date, a few days later, he told me about all the research he had done on CF and transplant. He knew more than I did about some things! While normally I would wait to talk about all the unhappy truths of my health and early death, he asked me questions that proved he really wanted to know the deal. It wasn’t long before we had gone into deep and uncomfortable waters, exploring how we would handle saying goodbye. I was very impressed with his bravery and openness.
Jason restored my faith in fairytales. Every cliché that has been written about true love applies to us. We knew right away that we had found something special. We wasted no time entwining our lives. He is in no way in denial about my situation, but it inspires us to love harder every day. We know we don’t have a lifetime, but what we have is worth it. He is “the one”.
As a person living with illness, the road to love was often confusing and discouraging. I have the battle scars from years and years of bad choices and faulty perspectives. Now, after consciously working to change my patterns, I have found what I always hoped, but never truly believed, was possible. I have the happiest and healthiest relationship that any human being could hope for, with or without CF. All I can do now is talk honestly about all the things I wish someone had told me when I was searching for answers to the tough questions. I hope that some of my big mistakes will serve as a warning to others as well as an inspiration to require more from themselves and those they choose as partners.
Below I have jotted down a few things I Wish I Knew A Long Time Ago. They seem simple, but they really are key.
Pre-Dating “Homework”: It is essential before you begin dating that you clearly establish a strong foundation of self-love and appreciation. Sadly, it is easy for some girls (and boys) to see themselves as “damaged goods” and therefore be willing to do things in relationships or overlook major character flaws that they wouldn’t if they didn’t have an illness. The first step in doing this is to uncover the difference between your mind, your body and your soul. We so often find our self-esteem in the clothes we wear or how pretty we feel, but it’s important to go deeper to discover what is valuable about you beyond the physical. Once you are able to make that differentiation, you can then explore who you are and what you believe about life on a much greater level. When you can truly see yourself as the amazing person you are, you will then be able to begin the search for a healthy relationship.
Dating: There are so many questions that come up when you first start dating a new person. Things like, “When should I tell him about my illness?” and “What kind of reaction will he have?” can distract you from getting to know someone. The answers to these questions need to be explored in your “homework” so you can enter into dating with a plan. You have to figure out where you stand on these important issues before you go on the date. Trying to sort out when you should tell someone about your physical problems in the back of your mind won’t work; you won’t be engaged in the moment and will miss getting to know the person in front of you. If you think of these things ahead of time, you will have a game plan and can feel more confident.
In general, when you are on a date, it is essential that you find techniques that help you maintain your level head and not get caught up in the “need to impress”. Pretend like it’s a job interview and you are the employer! There’s only one position available as your partner, so be discriminating and choose wisely!
Getting Serious: When you have an illness, falling in love can feel bitter sweet. Amidst the excitement and joy come the questions: “How will we handle it when I get sick?”, “Will he stay with me when I am in need?” and “Can I or should I have children?”. Facing the sad parts of your reality head on is key to having a strong relationship. If you can’t talk about the hard things, there will be trouble down the road. As the person with the illness, it is your responsibility to educate and initiate dialogue about your disease process. It is your partner’s responsibility to take it seriously and look within themselves to see if they are up for the challenges ahead. If your relationship is going to work, you will both need to feel safe and comfortable in talking about your true feelings at every turn. While facing illness is difficult, it can enhance a relationship with the right partner because you both will be keenly aware of how precious your time together is.
The burning question for many people is; “Can I have the relationship of my dreams despite my illness?” and my answer is “yes”. There is someone out there who will love you enough that a short time together is better than no time at all. Is your life more complicated because of your illness? Yes, but you have the opportunity to embrace your challenges and enrich your life and your love.