Most people who know me on a personal level, would say  I’ve been a very private person for most of my life. It wasn’t until I was in my middle thirties, that I shared with one other I had  lived in a Children’s Home and even then, what I relayed was very little, in a therapeutic encounter . The earlier years of my childhood I discussed reluctantly, some years later. It too was limited. Very few people ever asked.

For years, I searched for personal articles and books written by people who had navigated the foster care system and found little that discussed the trauma they had experienced, or how it affected their adulthood. Care providers wrote some on the subject, but they did not live it. There was stigma attached to living in a children’s home, talking about one’s trauma and abuse, and to some degree, there still is stigma attached to “having depression or anxiety.” I wrote about it in my poetry and in my journal, but that was kept private. It has just been within the last two years that I have discussed experiences from those years in more detail or in things I had written during that period of time. I was adjusting to the idea of retirement and wanted to grow psychologically and spiritually. Part of my search for growth entailed having therapy to understand myself more, and I’ve read many books and articles in the last few years on child abuse and trauma. It has been helpful and I have grown. I also wanted to share some of my knowledge and skills I’ve learned with others who had experienced trauma. I wanted to educate people who were fortunate to have supportive childhoods about trauma so they could understand better the struggles of those who had been abused. My goal was to give survivors of abuse another resource for healing.

A year and a half ago, I was diagnosed with a serious illness while in the hospital recuperating from pneumonia. It is a rare disease that usually shows up in early childhood. For some reason, it lay dormant in me until I got sick with pneumonia. Very little is known about this disease and people who have it have just started to talk more openly about it. My treatment consists of being hooked up to an IV for about eight hours a day every other week in an Infusion Center in a hospital with other people who are battling cancer, multiple sclerosis,  and other immune and auto- immune disorders. There are unpleasant side effects.

They infuse a solution filled with antibodies into my body to try and raise my body’s defenses against other illnesses in the community. There is fatigue, at times severe, nausea, muscle spasms, blood clots, and other side effects. It drains the body and one’s spirit. Getting IVs  placed in my arm  and laying still for eight hours each infusion day is no picnic. Depression is common. Isolation is advised when others in the community are ill so that their diseases ( flu, pneumonia, childhood diseases,etc.) are not passed on to me. This is something I have to do every other week for the rest of my life.

Very few people understand how disruptive a Primary Immune Deficiency Disease can be. It affects the lifestyle of those who have it. It interrupts their daily routine, and can limit their social activities as well. The public needs to be more educated about diseases of the immune system. These diseases will be more prevalent, I believe, because of all the toxins in the environment. I have good days and bad days. Each infusion is different in how it affects the body. The antibodies come from donors which also carry risks.

I have decided to be open about this for my self-growth and to help others who are having to deal with a chronic illness. Past trauma in childhood is triggered with each infusion,  causing PTSD symptoms. I  have to admit that this illness affects me more than any other trauma I have had. There are days it kicks my behind. There are also days when I come out on top. If, in writing this blog, I help one person who has this disease, who  has been abused in childhood, or has been through foster care, then I will have accomplished my purpose here. This illness has also led to a spiritual quest in me.

Yu/stan/kema