It’s only hair… That is what I have been telling myself for months. In my last post I talked about how I had to adapt my hairstyle when my medication, Tysabri, completely changed the texture of my hair. I was feeling very happy with the results. This is how it looked:
I also said in my previous post, that the only constant for a person with Multiple Sclerosis is change. Some changes are harder to embrace than others.
I had been somewhat stable on Tysabri for two and a half years so I embraced the changes my hair had gone through during that time. Better for my hair to be fried than my brain, right? Sadly, it was not to last. I had a severe exacerbation immediately following this haircut and found that the medication was no longer working for me so I made plans to switch to a new MS maintenance medication called Gelenya. Because the waiting period for the new drug was too long I had to have one last Tysabri infusion.
I had my final Tysabri infusion right after Christmas. The next evening after brushing my hair I noticed red hair all over my white tile bathroom floor. That’s when I noticed that the hair on my head was frizzy and dry and suddenly the ends looked almost burned. The next day I got out of bed thinking I would do an argan oil deep conditioning treatment and improve it in no time. As I walked through my kitchen I noticed something on my floor. I jumped because I almost thought it was alive. It was a chunk of my hair, seven inches long and about two to three inches wide. I went to the mirror and found the inevitable hole where my hair had broken off a couple of inches from my head. I cried. Thus began two months of watching my hair break off in clumps every day. This is what greeted me in the mornings after carefully running a pick through my hair; one to four inch pieces of red hair covering my white tile bathroom floor.
Standing in front of the mirror I would tell myself, “It’s only hair.” Then all of my old insecurities would come flooding back. I would think about the fact that I have an ugly head. Really, it’s huge! I have felt that way since I was five years old and had that monkey bar accident that resulted in 6 stitches on my forehead. Whether it’s that scar or because I have always been told I have my Grandpa’s forehead, or because of how I was bullied in school, I look in the mirror and see Mount Rushmore! Both friends and family have told me that it would look bad without bangs to cover it up. I’ve always been self-conscious about my oval head that makes my face look too long. I had also been told for years that I was ugly with short hair. The one really short cut I had gotten in the early 90’s was a disaster after which I decided, never again!
When I divorced at age 34 I began to grow out my bangs for the first time in my life. I had always wanted to try it and there was no longer someone there to tell me I couldn’t or that it was ugly. Also, after the divorce the people that stayed in my life were very supportive and I think, maybe, I just stopped caring about what everyone else wanted or thought about how I looked. I grew my bangs out and kept them that way for over 5 years baring my forehead to the world. That was a big step for me. This past year when I got side bangs it was because I wanted to, not because I felt pressure to cover up my mammoth head.
My hair breaking was different though. On top of that, alopecia is a rare but possible side effect of the new MS medication I chose to start in January. I had to consider what it would be like to be completely without hair if it got worse. The giant mole behind my ear that no one sees would be in plain view along with my scars. My hair hides a lot. I don’t think we realize how much our identity is wrapped up in our hair. It is a bit like armor. I can be having a terrible day, but if my hair looks good I am perkier and more confident. Sound silly? Shallow? Maybe, but it is the truth.
I think that my mindset had a lot to do with loss of control as well. My body was suffering a major setback. I could not control the muscles in my back or my legs, I didn’t know when I was going to find myself on the floor and the sensation of choking on my own spit was returning. After all of that you would think that hair loss would not faze me, but this was different. I have been losing control of my body for years, but at least I could choose how I looked to everyone else. My hair was another choice being taken from me. I could no longer decide for myself what look I would present to the world. Just thinking about it made me feel vulnerable and exposed.
I had another talk with Tasheena, my stylist with Bombshell Salon and made an appointment. I set up a Pinterest page with short hairstyles. I started pinning pictures that were bob length, but soon realized that chunks had broken further up and that it was just so damaged it needed to go as short as possible. I considered buzzing it and starting over. Instead, I started looking at pixie cuts and wearing hats everywhere.
As I spent time in prayer about it, God reminded me that many times I had seen a woman with a short and sassy cut and wished that I had the guts to try something that daring. He brought to mind some verses about fear, like:
2 Timothy 1:7, “For God gave us a spirit not of fear but of power and love and self-control.”
I was also reminded of the Apostle Paul when he pleaded with God about his thorn in the flesh, God’s answer from 2 Corinthians 12:9a, “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”
At first glance the pessimist in me sees God using these scriptures to say, “Suck it up, girly, and quit being such a whiner…” That is what I want to say to myself, but then I remember that he is gracious with a heart in which flows love and compassion. God is not indifferent to my stress and pain. Both of these verses speak of power, power and love that are available to me and to you. That power does not come from God magically fixing all of my physical problems, but in his Spirit which he sends to reside in me. His presence walking with me through the storm provides me with his unfailing strength. It is in him that I find the fortitude to be content regardless of my circumstances.
It is when I am at my weakest and can no longer rely on my own strength that the power and strength of Jesus shines through. That is the beauty of Christ in me. He was no stranger to suffering, but chose sacrifice for our sake. I feel him with me every day if I stop freaking out long enough to stop and listen for his voice. When I listen I remember that my identity does not depend on my hair or any other outward thing, but rather on the God who created me to live this life and walk this earth through these things. I am still trying to learn everything I can through this journey I am on and I trust him to bring me through it.
When it was time to start my new medication, Gilenya, I was required to take my first dose at the Cancer Center in Coeur d’Alene, just in case there were complications with my heart rate. I was there under observation for over 8 hours. While there I met courageous women fighting for their lives. They were beautiful, strong, bald and many of them smiling. For some reason the length of my hair fell down on my priority list.
So back I went to Bombshell Salon where Tasheena transformed me once again. Here is what we came up with this time:
- I wanted a cute pixie cut, a little edgy, but not trying too hard, and definitely not old lady since I’m turning 40 this year!
- To style it I purchased a new round brush with soft bristles, a teasing brush and styling paste with a matte finish and strong hold.
- I stayed with the red. It would kill what is left of my hair to try to bleach it back to its original color so it was either stick with red or go through the awkward grow out phase now. I decided that chopping it off was enough transition for me at this point.
This is me before. You cannot see all of the damage in this pic, the layers broke at different rates with large portions broken under the top layer. This is what a person walking down the street behind me would have seen. You can also see what I talked about in my last post with the curly on the bottom layer and straight on top.
My lovely stylist Tasheena cutting it all off.
This has been a difficult process for me, but again I feel that the growth I have experienced is so valuable. I have gained a new level of acceptance of myself, and have thrown off the shackles of fear and shame that have dogged me since childhood. It seems that when the emphasis on the outward appearance is challenged we are forced to dig deeper and find out more about what is on the inside. It took losing most of my hair to overcome so much baggage. It is not just my head that feels lighter, but my heart as well.
People ask me at times how I can be so enamored with a God that allows me to be sick and struggle so much. I don’t have all of the answers and of course would love to be healed, but I have matured more and learned more about myself and humanity through this illness than I ever could have without it. It is part of what has shaped who I am and I am stronger in spirit because of it. Maybe he’ll heal me someday, but in the meantime my love for God is based on who he is, not what he can do for me or give to me.
If you are struggling with hair loss or other issues that challenge your outward appearance I hope you will be encouraged to focus on the positive things that God wants to accomplish in your heart. Look for solutions, but don’t miss out on the bigger picture. Maybe it is an opportunity to view yourself or others from a different standpoint. I feel a freedom and strength today that I have never before experienced. Bless you and thank you for reading. Please join me next time on the journey to a life tenacious.
(Photo of Tasheena by Jeremiah Andrews Photography)