A Little Taste of Freedom

A week ago Friday I had something completely amazing and exhilarating happen to me! For the first time in 4 years or more, I descending a set of stairs without grabbing, touching, or leaning on the handrail! What is even more impressive is that I descending not only one set of stairs without using the handrail but I walked freely down 3 sets of concrete and wood stairs at the Pike Place Market in Seattle among groups of other people passing by!

First let me explain that such a feat has been terrifying for me since I completely lost balance function in 2005. After losing my balance I quickly discovered how painful it was to be falling all the time and as I lost more weight I also lost more cushioning which once protected me. Therefore, the darker the stairwell and the harder material each stair was built of, the scarier the stairway became. If it was a large set of stairs I would stand at the top, take a gulp and hold my breath as if I were about to parachute off a 1000 foot cliff. I clutched the handrail for dear life!

It has been 3 and a half years of constant work. For one, I had to learn to brave going up and down stairs because I live in a house with 3 sets of stairs that I use daily. I cannot get into my house or up to my bed without using stairs. I have been like a cat. It is okay going up but not so okay going down. I had to train myself to accust0m my body and balance to walk up and down stairs again and to overcome my fear. To not do so, would have meant surrendering my lifestyle and leaving the home I love so dearly.

2005 was a hard year, 2006 was building up my endurance again and stamina, and the last year and a half has been for building up my strength again and improving my balance. Since Feb-March 2007, I have been consistently adhereing to a training regimen of weight lifting, water aerobics, and practice on a balance device at the gym. Without it, I do not believe that I would have come this far.

The locker room is upstairs at the gym and even though there is an elevator I refuse to use it. I used it in the very beginning but after a couple months I felt confident to use the stairs and felt I needed to challenge myself and practice.

The stairs are very safe and rubber coated with slighty raised dots for tread. Therefore, I am not as fearful on them and both handrails are within safe grasp. Gradually I built up my confidence and started to not rely on the handrails so much until I was barely touching them. Within the past month, I have practiced letting go and descending the last 4-5 steps where the staircase widens.

Then a couple weeks ago I was able to walk down my deck stairs without keeping both hands on the handrail. I had to stop and think about it at the top but as I neared the bottom the feeling of walking down stairs normally just sort of naturally took over. I was so incredibly happy that I had to do it again about 2-3 more times to believe what happened. Then I cried tears of joy and the release of pain from being restricted over the past few years.

I don't know if you can really understand. Before I lost my abililty I would run up and down stairs without thinking about it, nudge close to the edge of a cliff to peer over the edge (I could not help myself), and freely rollerblade efficiently all over jumping ruts, bumps, and curbs. I could never imagine what this could be like....being restricted from your freedom of movement.....how what could seem so easy and simple become an arduous task causing you to break a sweat!

When my balance was still very poor, I was taking ASL classes at the community college where there are several young people hustling and bustling about. Everytime I saw someone skimper down the stairs while carrying a large bag or backpack and head turned chatting to a friend or a cellphone propped on the other shoulder, I would become incredibly saddened. I all of a sudden felt very distanced from my youth and like I had become old and feeble while in my prime. It was tough and still is on occassion but I am more adjusted and accepting of it now.

The loss of balance for me has been very hard and caused a deep and long mourning for my older self that skied, rollerbladed, hiked rugged trails and enjoyed the thrill of elevation and challenging hikes, did more shore diving than boat diving (scuba) which expanded my options greatly, was very efficient at slalom waterskiing and even skiied on surfboard behind a boat once, and was able to handle riding my own motorcycle. When the tumor took my balance all these things and my way of life stopped...was cut off cold turkey as if I was put in handcuffs and locked away. It has been very difficult and took a long time to adapt to my new body and the limits placed on it from my balance digression.

Fortunately I have figured out a way get back some of my ability and to maintain it. I would be happy if I can maintain this current state as long as possible. Thus, as my friend who also has NF2 says "Everyday is a training day." Striving to stay healthy and taste the freedom is a way of life n0w.

So if you can relate to what I have been telling you, you can see why something as simple as descending a set of stairs without grabbing a handrail to me can seem a major accomplishment just like reaching the summit of a great mountain. For a moment, I am free again.