Despite my misfortune, I still live life to the fullest I can.
At three years of age, I was diagnosed with a rare disease, which initially had little impact on my life. The disease, called Langerhans cell histiocytosis (LCH), is a sometimes life-threatening cancer illness, depending on where it is located in the body.
Do not be fooled– despite the lack of coverage on LCH, many adults and children have died as a result of disease. It’s not discussed in the media because of how uncommon it is. This proves to be a disadvantage for those who have this illness.
I was diagnosed with LCH in the skin and bones– a fairly non-life-threatening area to become infected. Three months of chemotherapy treated it. However, I was left with a life-long hormone deficiency called diabetes insipidus, which is the lack of the hormone called ADH. ADH controls the levels of liquids in and out of the body, but the condition can easily managed with medication.
However, that wasn’t enough. Life wasn’t done and the worst was yet to come.
At age 13, I developed an unusual walking gait, with a limp whenever I took a step. I was diagnosed with tight hamstrings, but no matter how much physiotherapy I had, the limp stayed there. Two years passed and eventually I was diagnosed with neurodegenerative central nervous system LCH (ND). Neuro- meaning brain involvement, degenerative- meaning continually getting worse.
At 13, I didn’t understand what this meant. I was oblivious to the changes that were to happen, so I ignored the warnings and continued with school and daily living. All the while, in the background, I was mourning my lost abilities and fearing for my abilities that I was losing.
At 15, I transitioned from walking to a segway, as I was adamant not to go down the wheelchair route because I didn’t want to fall into the misconceptions people have about wheelchair users, or not have a voice regarding my own life. At 18, I was given an ultimatum. I had to either switch to a wheelchair or face no more education. I chose the first, putting my ego aside.
Entering society now in a wheelchair opened a whole new set of eyes to me.
I witnessed the judgments, helplessness, and dismissal others felt they had the right to treat me with. I also witnessed the rare diamond in the rough who treated me like any other human being, but believe me, they are hard to find.
At 25, I hope to have qualified from a three-year bachelors degree course in journalism. At age 23, I gave birth to my son; this is unheard of for those with ND and challenges many false assumptions about people in wheelchairs.
My partner and the father of my child believes that every person has a personality and deserves to be treated this way. It is just a bonus that he is good looking!
With his help, I hope to challenge the perception of those in wheelchairs in Ireland, and eventually around the world.
About the Author: Niamh ni Ruari is a 25 year old mother of one. At three years old, Niamh was diagnosed with a rare form of cancer and was treated with chemotherapy. Niamh went on to live the next 10 years relatively complication free. At 13 years old Niamh started showing symptoms of an unusual walking gait, and at 15, was diagnosed with a degenerative condition, related to the rare cancer. As Niamh’s condition continues to deteriorate without an effective treatment, her objective in life is to take nothing for granted and live everyday to the fullest. Check out her blog, Twitter, and Facebook.
