So, today is Halloween, October 31, 2009. It also happens to be the seven-week mark since I called 911 to take me to the hospital. Since that time, so much has happened. For anyone that might be reading this blog for the first time, here is a quick recap of the situation: I’m a 32-year old professional athlete who contracted Guillain Barre Syndrome. This is an illness that attacks your immune and your peripheral nervous system. I have a 36-week pregnant wife and a two-year old to care for. I’ve been fortunate through all this to have the incredible support from friends and family. This has helped me to be very open to this experience and in turn, share it with others as a tool for personal learning.
Day 42 - This past week was particularly interesting. Last Sunday my progress began to slightly regress. I felt a minor sensation loss in my finger tips, thumb, palms, in the soles of my feet and big toes. I admit – I was scared. The fear of starting all over again was a lot to contemplate. I had no doubt that I would, and could start again from scratch if I had to, but it was still very worrisome for me. We wondered if I had been over-doing it. This seemed the most likely since it is in my personality to go more than to rest. So, we slowed down, backed off on therapy a bit and I went in to see the Neurologist. She was only mildly worried as this can be normal but is repeating the tests to get an accurate measure. She was concerned about my anxiety levels and the amount of stress that this experience is causing due to our unique situation with Jenny being so pregnant.
As a part of my learning I am going to share as honestly as I can about how I am feeling and what brought me down this week;
In the immediate term I have lost a lot of what makes up my life. I spent 28 days in hospital. I lost the ability to walk and relearned how quickly things can change in an instant. I have not been able to spoil my pregnant wife like a pregnant wife should be spoiled. I can mostly take care of myself around the house but I don’t feel safe being alone with my son yet. I can’t run out and get donuts at midnight for Jenny. I cannot drive. I’m not able to just get up and leave the house, to blow off steam or escape or get a change of atmosphere. I cannot control what stress factors come into the home where I am mostly sequestered. I wake up with headaches most days. For the first time since I can remember, I cannot touch my toes and stretching is like a full game of Lacrosse. I have pain every day to varying degrees. I cannot work yet. When I do try to work I have a hard time with the stress and feel anxious. I have to take medications every day and I don’t like it. I miss people and the world, even the strangers and especially the odd and unexpected things. I miss my friends and I hated to learn the tough lesson that some friends step up and others disappear when times are tough. Family is supremely important and should never be undervalued or taken for granted. It seems too, that everyone has their own shit and we often think ours smells the worse (mine only sort of stinks). The financial impact of this is not fully understood yet and it will get worse before it will get better. I am OK with all of this. It is my reality and it could be much worse. I am OK with all of this. I am OK with all of this. I am OK with all of this.
Now for the positives and what I’ve learned:
Luckily, I only have Guillain Barre Syndrome and I will heal from it and return to a full and normal life. My medical attention was incredible and saved me from a far worse experience. My wife and family have been incredible and I appreciate their efforts since there is no text book for how you deal with something like this. My mom and dad have set an incredible example for how a parent should love their child. My recovery has been astonishing to this point and a few setbacks or plateaus are normal and are OK. I should not get ahead of myself and I should continue to use my healing time to be better in every way; physically, mentally, emotionally and spiritually. My home is safe, I am lucky to have it. Finances will work themselves out and the sacrifice of things and luxuries is small in exchange for my health. Staying present, in control and clear minded is difficult but supremely important to health and good decision making. Meditation is an excellent tool. You can learn to accept pain and welcome it and it listens. I am filled with love and energy and need to focus it inward right now to heal myself so I can better share it with the world when I am back on my feet. I have all that I need and will need. My baby girl will be born soon and both she and Jennifer will be healthy and happy and our family will flourish.
Thanks to all of you for providing me with this forum to express myself honestly, explore my feelings openly so I can heal. I feel much better after writing this all out.
Love you all,