Accepting My Trach After Grieving My Old Life

I’ve been depending on my tracheostomy tube to supply me with sufficient amounts of oxygen for 11 years. At this point, its presence is familiar to me in much the same way as a favorite piece of jewelry that’s worn every day. I don’t always think about it, but the knowledge that it’s there is reassuring. And its absence would be instantly noticeable — not to mention dangerous, as I can’t breathe without it for more than a few seconds.

I once wrote about how trachs should be viewed as the lifesaving medical devices that they are instead of being stigmatized. That’s true, but I have to admit that I haven’t always seen trachs as a positive thing. It took time for me to accept mine and fully appreciate it.

I received my trach at age 13 in the midst of battling a life-threatening illness. My doctors had been planning to transition me from intubated ventilation back to my less invasive BiPAP machine, but the procedure didn’t go as expected.

Instead of a smooth switch from one machine to the other, which would have been an improvement, my heart stopped beating twice, and the doctors determined that giving me a trach was the only option for keeping me alive.

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Prior to that hospitalization, I had discussed the possibility of needing a trach with my family and medical team. Honestly, I hated the idea. I didn’t want to have surgery or admit that my body was getting weaker. I didn’t want my life to change. And at the time, families were usually informed that having a trach would shorten a person’s lifespan, so my fears were not unwarranted.

But at the same time, I wanted to live. I wanted my doctors to do everything in their power to keep me alive. So, I decided that a trach was acceptable, but only as a final resort to save my life. I shared my desires with my family, and they honored and advocated for my choice since I was too young to make official medical decisions for myself. Emergency plans were put in place, and we were optimistic that my condition wouldn’t actually decline enough for me to ever need them.

After my trach was placed, I was immensely grateful to have my life, but I still had a long way to go on my journey toward acceptance of this new medical device. It was doing its job of keeping me alive, but I still didn’t like it. I certainly wasn’t happy about it.

That hospitalization was the start of a personal transformation, but it would take time for me to realize that and embrace it.

I remember being much more aware of my trach then, and I didn’t find it as reassuring as I do now. It was uncomfortable, and I was self-conscious about it. It also required me to have home nursing care for the first time ever, which was another huge adjustment for my whole family.

I wish I could tell you exactly what changed my perspective, but the truth is that it was a gradual process. I had to grieve my old, familiar life before I could fully recognize the blessings of my new one.

I think we all know something about grieving a past life now that we live amid a pandemic. We liked the way things were before, and we don’t want everything to change. Change scares us.

I’ve come a long way from being that scared teenager who wanted to deny that she really did need more help breathing after a devastating illness took its toll. There are still things I miss about not having a trach, but I’m genuinely glad I do have it. It’s enhanced my quality of life and contributed to my good health. So, I guess change can be good sometimes.

If you’re grieving the loss of your old life, I want you to know that it’s OK to be sad, angry, confused, or anything else that you feel. Be patient and give yourself grace. It’s hard to let go of the past, and it might take time to heal.

I hope that as you grieve, you remember to look for the bright spots. Whether you’ve acquired a new medical device, the pandemic is weighing you down, or you’re struggling with something else, good can come from it. When you’re ready, embrace it and wear it proudly like your favorite jewels.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.