Wednesday, May 22, 2013

Special Needs

The first time it happened was two weeks into therapy at the rehab hospital. Surrounded by friends, I wrestled to lift my paralyzed legs, who once danced on their tip toes and kicked high into the air, one by one, onto the therapy mat. These legs now weighed more than I thought possible. I shed heavy tears inside, but kept a strong face of determination. And as I pierced my lips and breathed deeply, partly to stay focused, mostly to hold back the tears, I lifted my right leg and it happened for the first time in front of everyone. It previously reared its ugly head, but only in the hospital bed, surrounded by trained nurses. It is a part of paralysis that isn't talked about, only among other spinal cord injury victims. It is the part that is kept secret for fear of judgement. It is the part that leads to so much fear of scaring away partners, friends, and family. It is the loss of bladder and bowl control or as we former nannies like to call, a blow out.

Loss of function and paralysis, means complete loss of function and paralysis below the line of injury for me. Everyone is different. Some have some control over some things, some don't. For me, as one who is diagnosed with a complete spinal cord injury, it means everything below my belly button no longer functions. When I first learned this, when I first experienced this complete loss, I felt utterly devastated. Without a shred of hope, I assumed one day venturing out in the world impossible. I failed to see that I would ever gain control. I only saw humiliation the first time it happened in front of people. With eyes filled with tears, I looked at my physical therapist and asked to go to my room. I wanted to hide the shame. My friends waited outside the door and I didn't want them to come in at all. The cheerful and compassionate nurse cleaned me while sharing story after story of patients experiencing the same embarrassment. It didn't make me feel any better. I wanted to crawl in a hole and be left alone. But, the nurse opened the door and one of my friends came in the room. Justin walked over to me, now lying in my hospital bed, my comfort zone, and brushed away the hair on my forehead, leaned down and planted a tender and healing kiss. A simple kiss that said, I know this hurts. Words were not necessary. His presence, his taking a seat and pulling it close to my bed and just sitting next to me, they said enough. I knew he was there and I knew he saw inside of me.

Today, thirteen years later, I suffered from bladder spasms all day. This means, without getting too graphic, that my bladder releases itself whenever it feels like. I stay on top of my loss very well. I am very independent, don't use much to help, only the necessary items, and usually achieve great success. The healthier and more self-disciplined I am, the better the outcome. But, whatever success I may find, I never truly have control. This part of me is still paralyzed, like the rest of my lower body. Every time I have an accident, as I like to call it, I return to feeling humiliated and want to crawl into that same hole. However, today it was different, very different. I felt insanely grateful. Usually I am a mess. It usually flattens me. I wonder why it happens to me at the worst possible moments. I wonder why I deal with it at all. I wonder why just this part of my body can't just work again. I try to convince myself life would be infinitely better if only I controlled my bladder and bowl. Instead of the hole, today I chose gratitude. I chose to be thankful I was home all day, chose to be thankful it hadn't happened in quite a while, and chose to be thankful I was alive to deal with the suffering. It doesn't mean I didn't feel the pain, I just chose to be grateful for the pain.

Normally, I make a quick call to the doctor and decide how to treat what I assume is a brewing urinary tract infection. As a person with paralysis, this is something I live with constantly. The infections attack with a vengeance and sprout from many unknowns. Basically, they just happen. During the past several years, I took so many antibiotics, I feel my body just needs a break. Instead of trying the antibiotic approach first, I tried my little home remedy I created for infections like this. I promised to call the doctor if it didn't clear in a set amount of time. So, I hopped in the car, with necessary precaution, and drove to the Starbucks drive-through window and ordered a venti iced green tea. My method is to drink as much as I can, water and green tea. The tea seems to help the most. I drove home and waited for the infection to pass. During this process, I feel like I can't leave or do very much because all of my attention needs to focus on healing. And as I rested and nursed myself back to health, I thought quite a bit about past experiences. And this time, instead of reliving the humiliation, I found the joy. I found the lessons learned and I found the strength I used to move forward. I remembered that first time in the hospital. I remembered when it happened at a football game and my friend, Natalie, crawled under the public bathroom stall's door, time and time again, to fetch cleaning supplies, whatever she could find. I remembered how she made jokes and told stories of similar circumstances happening to her when she was pregnant or after a surgery. I remembered her tenderness, kindness, and love. I pictured Eileen rinsing and washing cushion covers and clothes in countless rest stop and hotel bathrooms. I saw Ashlea taking on a group of drunk girls banging on the bathroom door in a bar because I was taking too long. I saw my sister leaving a bar with me an hour after we arrived because I had an accident and needed to go immediately. I saw all of this and many more examples rushing through my mind. And the common thread that stuck with me, was not the accidents, it was the kindness and understanding. And as the day went on and I started seeing a light at the end of the tunnel, I saw my mom come over, drop off groceries, pick up dirty laundry, unload and load the dishwasher, and walk my dog. All of this brings me joy, not pain.

I have special needs. I just do. That's just the way it is. I can't always attend every dinner or every party. I can't drink exactly what I want and how much of it I want to drink. I pay for excess in dividends. I decline invitations and leave suddenly. I calculate proximity to bathrooms and fill my bag with my supplies. But, over the years, I learned this isn't so bad. I eat well, a lot of green stuff I used to loathe, I rarely have more than one or two drinks, and I stand up for myself and my needs. My needs probably prevent a lot of stupid mistakes. The forced discipline shows me the life I truly want to live. I am more awake, more alive, and far more aware of others. My heroes and heroines are those who exhibit high levels of self-discipline, self awareness, and strength, not those that throw caution to the wind. Sure, I can say if only I had this or if only I had that, but it doesn't change anything. I have special needs. And the thing I discover most about having these needs, we all have special needs.

Everyone carries a hidden humiliation or burden or secret he or she doesn't want the world to know. Everyone keeps hurt and pain buried deep down inside, afraid of shun if it is discovered. However, the truth is, once I let go of my pain, share my truth, it not only heals me, but also helps heal others around me. Because when one person starts sharing, everyone starts sharing. There is safety in revelation with someone who has already revealed. We realize we are not our failures, we are not our successes, we are human. And all humans basically want the same things. I may not live every one's pain. Mine may seem worse to some one else or it may seem blissful and easy to another. I can not fathom some types of pain, like living in a worn torn country run by rebels or starving because I can't afford to eat. What I can do is see myself in others. I can see the part, in all people, that wants to be loved, wants to feel kindness, longs for understanding. I can not only see these needs, but I can, to the best of my ability, give of myself. I learn to offer my kindness and understanding. I learn to smile more and hold doors when I can. I learn to sit with people in pain and help in disasters. It doesn't matter the size of the gesture, I find a way to help or extend that part of me I find in others.

We are all in this together. We all have special needs. Our hearts, our spirits, our joys, our sorrows, they are one. The outsides may be different, the cultures may be far apart, the needs may vary, but we are one. I choose not to feel separated by what I can not control. I choose to see the uncontrollable in everyone I pass. I choose to refrain from guessing motive or intention. I do not know why a friend declines an invitation or a cashier looks down or a fellow shopper seems frustrated. I don't know why and I don't need to know why. The only thing I need to do is offer understanding, kindness, and love. I need to be the person who listens, instead of judges. I choose to help. I am these people, these people are me. If these are things I need, these are things I need to give. Give of myself always, it is so simple.


  1. I found your blog because "Enjoying the Small Things" is also my favoutite one. I am glad I found you :) Love your writing and your words.

    Big hug,


  2. So true...I always get an injection of humbleness when I read your blog. Good stuff. xx

  3. So honest and so important for people to understand.

  4. I've said it before, but your positive attitude is infectious. And I love that you aren't afraid to be honest.

  5. I love the idea of choosing to be grateful for the pain. I am going to keep that with me when I get frustrated when everything doesn't go just the way I imagined it.

  6. You are amazing and inspirational and brave xxx

  7. YOU are a beautiful and impactful writer! I have never read anyone describe the realities of living with spinal cord injury the way you do, with such clarity and honesty. More importantly, how these harsh realities help / force you to grow. You are simply amazing, and I'm not one prone to overuse the word amazing. I have an incomplete spinal cord injury that began with paralysis from the chest down 10 years ago, and has improved to where I am considered 'high functioning'. Although I'm not encumbered by a chair, I can relate to so much of what you write and how the effects of the damage are still with me every day. I learn from your writing how to reframe my own struggles differently. Just last week as a leg gave out and I did what I call a towering inferno to the hard tile kitchen floor, rather than cry with frustration as I've done many times, I immediately was grateful for not being hurt, hitting my head etc. and I moved on. I LOVED that you wrote with such honesty about the bladder/bowel issues and control in general, and seeing everyone as having their own version of loss of control. loved it, loved it, loved it!

  8. I love your thoughtfulness, positivity, and honesty in your writing and in you! I know it has been an extremely painful road and am encouraged by your positive perspective taking... changing your cognitions to alter your feelings and perspective. We can all learn a meaningful lesson from this for our own personal struggles and growth. Thanks for sharing and for being you ;)

  9. This is amazing and I am so happy that you found a joy.

  10. So simple yes, but the majority fail to just see what you put in words so perfectly.

    I agree, everyone have a special needs in a way or another and that what exactly make EVERY person a special one.


Thank you for commenting. I appreciate all of your words.