I am suffering from The Middle Child Syndrome.
I am not sure what exactly caused this syndrome, but I think it was a variety of factors:
#1: In less than a month, I will celebrate the 17th anniversary of my second kidney transplant. Mark down May 5th.
#2: In just about 4 months, I will celebrate my BIG 30 (Yes, the 3-0) birthday. Mark down August 31st.
#3: In less than a month, reality has shined its bright and blinding light on me yet again that (Thank goodness and **KNOCK ON HEAVY, DUTY MAHOGANY WOOD), while my second kidney transplant and problems seem to be floating in calm waters with continuing to pump life in me, my left hip osteoarthritis and avascular necrosis has forced its way to the forefront of my life at a breaking point.
Because I am a unique specimen, let me explain #3 point that must be the crux of me suffering from Middle Child Syndrome. Rewind to when I was 10-years-old and began to severely limp, which then led to crutches and then the need for a wheelchair. The determination was that my left leg was shorter than my right leg by at least an inch. Osteoarthritis had officially become a newbie diagnostic "friend" in my life due to avascular necrosis (this means that the bone is dead and so the bone will continue to break down gradually), which resulted from lifetime immunosuppressant medication Prednisone to maintain my kidney transplants. I still remember when the orthopedic surgeon said I would have to get a hip replacement by the time I was 18-years-old, but to put it off as long as possible because hip replacements do not last forever (they last about 20 years) and a revision surgery is riskier. What makes my situation even more complicated is I have a history of chronic kidney failure and lifetime immunosuppressant medications.
18-years-old went by and then doctor said I would definitely need the surgery by the time I was 24-years-old. I kept defying the doctors. I kept dealing with the pain to the point that it was normal for me and my every day life of going to school, then work, and juggling my newfound passion of organ donation/transplant advocacy work with my love and preciousness of time and the people that I love and care about and want to freeze-frame in my mind forever.
24-years-old went by and doctor said: "Okay, Mary, you definitely have to get a hip replacement surgery by the time you are 30."
And, so comes 30 in just about 4 months. And, so my left hip continues to break down from the avascular necrosis and osteoarthritis and now impacting and causing tears and rips in my right knee after almost 20 years of trying to compensate my shorter left leg to my right leg. And, so the pain that I'm so use to and is normal is teetering on unacceptable and abnormal now. Time is running out. In my early 20's, I was able to walk a good hour without pain. By mid-20's, I could walk about 30 to 45 minutes without pain. Now, at the tailend of my 20's, 15-20 minutes is my threshold and resting periodically is a necessity.
I question my quality of life and living every single day now. I fight with my body that continually tells me "You Can't," when my mindset, heart, and spirit that says: "I Can." I struggle to find the balance to control the pain that arthritis inflicts while attempting to live a normal and daily life, doing the organ donation and transplant advocacy work I love, doing the things I love, and being with the people I love and care about without pain always interfering.
Fast Forward to NOW (or rather about a month ago): My osteopath doctor who I regularly see for treatments on a weekly or biweekly basis said to me after reviewing my dismal, but unsurprising MRI Scan,
"Mary, you can't go another year without the hip replacement surgery, otherwise your right knee is going to continue to breakdown and you will need a knee replacement surgery. A knee replacement surgery is much more complicated than a hip replacement surgery, so you are better off doing the hip surgery now. Your right knee will heal on its own after the hip replacement surgery balances out your left leg with your right leg."
My first thought was that I never imagined that ANYTHING would ever happen to the right side of my body. I accepted my left leg problems because I always foolishly figured: "Hey, as long as it is one side, and not both sides." My second thought was actually the Transplant Games that I had been passionately pushing and training for since January, and so I asked her: "And, what about my swim training for the Transplant Games?"
"Go forward with the Transplant Games and then do the surgery," she said with finality.
Silly me thought I had this morsel of control in my hands again over my body that I would compete and continue with the swim competition training. Well, about a week after this final news that I would have to get the hip replacement surgery this year, I was out of work for two days after my latest day of swim training due to a bed-bound, sore, aching, and just about paralyzing muscle spasm. I moaned in pain as I tried to find a comfortable position, and I continued to hear my body's voice in my head: "I told you so. I told you that you can't."
I went in for over an hour of treatment with my osteopath again. She fought with my body as though it was an exorcism with trying to realign all the muscles and joints, and she said to me: "I don't think you should continue with such intensity with your swim training. Your swim trainer is training you as though your body is fine, and she needs to modify it because your body isn't fine. You are trying to swim 'the right way' or 'the competitive way,' but your body is in such a fragile state now with your knee and left hip....you just can't continue on this way, Mary."
I gulped and whispered: "Are you saying that I can't continue on with the swim training and I can't go to the Transplant Games?"
She immediately said: "No. I just think you should get the idea out of your mind of competing so hard. I think you should go, participate, and have fun, and I think you should return to your old ways of swimming because that is what your body likes and is accustomed to. It is too fast to change your swimming techniques and too much possible damage. I think you are forgetting what the Transplant Games are really about, and you are forgetting how delicate your body and situation is now more than ever.
I asked my osteopath: "Do you know anyone around my age who has had a hip replacement surgery after two kidney transplants?"
"No, I don't," my osteopath said honestly.
And, so this is when the Middle Child Syndrome seed was planted. I was too chronologically young to have osteoarthritis and to have gone what I've been through with two kidney transplants, but my physical body was too old. To emotionally and physically feel this way and to hear from my osteopath that I could not continue on with the swim training as a competitor was demoralizing. My whole life, I grew up hearing from my body and from others: "You Can't," and so I had naturally developed the attitude that: "I Can, AND I Will." My family and particularly my Dad said sharply at me when I shared this recent news to him while I was writhing in muscle spasm pain, "You are too stubborn to the point that it is stupid. You have to take care of yourself and prolong your body for as long as you can. You have to be selfish. You are trying to take on the world and make a difference, and forgetting to take care of yourself in the process."
Grinding my teeth and fuming inside, I didn't say anything back to my Dad as he continued his protective parental lecture and role. I finally said: "Doing my advocacy work, helping others, making a difference....they make me feel better. They make me forget the pain. They make me feel like I'm not all alone in this world. They make me feel like I'm in control of all that is uncontrollable in my life. They make me see that there is somethinig bigger, better, and more hopeful out there."
Pausing, my Dad finally said: "Find the balance."
About a week later after my latest muscle spasm and emotional and physical turmoil and specifically on April 16-18, I was on a plane to Washington D.C. for the 2012 Arthritis Foundation Advocacy Summit. The Arthritis Foundation had granted me an award to attend this event as an Arthritis Ambassador where I would meet with Members of Congress to discuss major access, research, and prevention issues revolved around arthritis. Over 350 individuals who suffer from a form of arthritis and from all 50 U.S. States gathered together at the Crystal Gateway Hotel in Washington D.C. to share and swap chronic, debilitating, and daily arthritic pain stories among each other, but especially to Members of Congress. There were the middle-aged and elderly who had multiple joint replacements from osteoarthritis and rheumatoid arthritis. There were the children that were mostly 10-12-years-old who suffered from juvenile arthritis since they were 2 or 3-years-old. There was Middle Child Syndrome me who was faced once again of my own unusually unique and fascinating story of chronic kidney failure/renal agenesis, two kidney transplants, osteoarthritis, avascular necrosis, and osteopenia.
The 10 or 12-year-old children looked up at me with curious stares and exclaimed with gusto as though I was their big sister: "You should be our guidance counselor at the Juvenile Arthritis Conference in Kentucky in July!"
The parents, middle-aged, and elderly said with admiration: "We've never heard of a story like yours! You're just a baby to have gone through so much!"
Yes, I was not a parent who could relate to caring for a juvenile arthritis child. Yes, I was not a middle-aged lady or man or grandparent by chronological age with the multiple joint replacements. What I was was smack dab in the middle of unrelating to any specific disease or person, but relating on the surface because of the vast array of health issues that affect my life and the people I love. I did not hold back with sharing my story and my passion about organ donation and transplantation and arthritis when I met with New York State Senators Schumer and Gillibrand's and House of Representative's Congresswoman Nita Lowey's staff members. I did not stop walking on the shiny and marbled floors in the Washington D.C. buildings, though the arthritis pain fatigued me to the point of wanting to collapse and eventually collapsing on the plush marshmallow bed when returning back to the hotel and when my body could not take the pain anymore. I kept on going, and I keep on going with my passions and advocacy work of organ donation and transplantation and now arthritis because the physical pain and the emotional sides only remind me of the beauty and the hope in what is in life, what is ahead, what is in the people that I've met and continue to meet, and what I am capable of within myself and the world.
As a two-time kidney transplant recipient that started to suffer from osteoarthritis and avascular necrosis at 10-years-old due to the lifetime immunosuppressant medication Prednisone that I was mandated to take in order to maintain kidney transplant function, I am an ardent healthcare advocate on behalf of organ donation and transplantation information and registration. I enthusiastically take on the new challenge as an Arthritis Ambassador Advocate on behalf of the Arthritis Foundation. Seeing children with their walkers and canes or wheelchair-bound, hearing the stories of the middle-aged and elderly eventually dealing with blindness and multiple joint replacements due to the severity of their arthritis, and experiencing this entire 2012 Arthritis Advocacy summit motivates and encourages me to share my story towards to the goal of continued research and a cure for the chronic pain that arthritis inflicts in my life as well as the lives of millions of adults and thousands of children.
I find a way to manage every single day with my arthritis because of my hope that there could be a cure for this debilitating and chronic illness that affects over 5 million adults in the U.S. and over 300,000 children. Arthritis and chronic pain has taught me the importance and preciousness of the QUALITY of life, and though manageable, it is certainly not acceptable.To learn more about arthritis and issues need to be addressed, please go to: www.arthritis.org
I continue with my activism work on organ donation/transplantation and arthritis, my modified swim training, the upcoming Transplant Games, and a hip replacement surgery all in the near future, as I am the lucky Middle Child Syndrome one who has experienced and can experience with others.
Perhaps this Middle Child Syndrome is only to my benefit as I go forward then.
Until the next post Keep Smilin',
April is National Donate Life Month and there are over 113,000 individuals waiting for a life-saving organ. Please register as an organ donor at: www.donatelifeny.org