Patience is not the ability to wait, but the ability to keep a good attitude while waiting

This is a raw feeling post from a few weeks of crap, triggers, and behaviors portrayed by others.

The thoughts and feelings of anger, having no patience, and trying to be fair to certain people about me, have returned. Some history – I have been fortunate to relocate back to the south after leaving Florida in 2001 to care for my mother who was diagnosed with metastasized salivary gland cancer. Back then the laws in Michigan for Deaf people that needed interpreters for medical situations were not strictly established as they are now. Due to this lack of accessibility for my mother’s health journey I had to change my life, my sister too. My mother refused to relocate to where my sister and I were living, so I did what I felt was the best solution for my mother to be safe, have support, as well as the proper care for her cancer journey. I sold my home, quit my job, left two very close friends to me “my total support system”, and moved back home to Michigan where I grew up. It was a very depressing and unhappy time for me as I never intended to return to the place of many difficult memories.

When I returned home, the turbulent relationship I had with my mother intensified with many bitter arguments and her extreme hurtful insults returned. Because of this, the MS disease became active after years of being dormant and this resulted in two major MS exacerbations that weakened me, the starting point of 24/7 neuropathy with intense pain and severe depression. I never really shared the MS symptoms and the struggles. When I did, I was given a lot of “really, yeah sure, exasperated looks from family and friends that went on for years until I reached my breaking point on a Thanksgiving holiday when I visited my sister in Virgina many years later. Oops, a squirrel moment, another time and place. I will share when I am ready.

My mother did not want me living in Michigan to support and care for her. She made that very clear in many of her screaming matches and abusive insults of being fat, get out and go back to Florida, I do not want you. My sister was caught in the middle and really did not know how to handle this. The one thing that shocked and hurt very deeply was my mother’s longtime friend who she met at St. Rita School for the Deaf threatened me in my own home. She came up so close to my face and pointed at me and signed in ASL, “you better be good to your mother, you better not hurt her. I know what you are and what you have done”. I was shocked and my surroundings went blank. I froze, I couldn’t breathe, I couldn’t move. My gut feelings were true. My mother lied to all her friends and some members of family about me. I have never threatened or abused my mother, it was the other way around. I left home at 16 years old, I did not feel safe around my mother. This marks my long struggle with myself to know that I am a good and loving person and to repair, heal and love me. When my mother died the last words, she said to me was “I am very proud of you”. I felt so much anger and hatred and wanted to just shake her awake and scream obscenities at her. To be honest, I cannot seem to think or feel that I loved my mother ever. She always hit me in the face and on my head. I always wondered if this is why I was diagnosed with MS? (I know it is not, but I do wonder). When she died, I felt relief. I am not sure if it was because she died or if it is my thoughts of finally, it is over, and I can live. I never cried. Today, I have let go and forgiven her because I need peace in my heart. She was a very unhappy person and I have finally realized and understood, it was never me.

Fast forward to 2024, 20 years later: Karen and I have worked on our relationship. I think it is more truthful, better communication, we share things no matter how uncomfortable it may seem.  I have set very strong boundaries with certain family members and friends. If I am uncomfortable because they do not understand especially how much MS has changed my brain and life and they still become hostile, angry, and verbally out of control, I stop it. I learned this through therapy, art, and journaling. I am working on my relationship with God. It is a work in progress, especially about honoring thy mother and father. I write in my journal about it and talk with someone about it. I do not have peace with that commandment or scripture. There have been many years of abuse and hurt. I know I cannot change it and I need to always remember I am ok.  Not sure what the bible says about people around us or friends. But I try to be patient.

Today, my patience with years of abusive, stupid people and being in 2 former relationships that were full of verbal, mental and physical abuse as well as working with people in the Deaf community is a miraculous deal. Yes, shocker – there is ableism, power and control, trauma, bitterness, and abuse in the Deaf culture.  I am Deaf because of the MS. I am in a power (electric) wheelchair. I have severe hand dexterity issues that often interfere with the ASL. I am lucky, I speak very well because I was hearing/hard of hearing once. I am constantly reminding people I live with I am not able to hear when they come into my space, and I do not know they are there. I am always turning on my speech to text app so that I can understand them even though they have phones and capabilities to do better and be respectful. I am constantly defending the disabilities I have pretty much every day. It is tiring and super annoying. I always made sure I was not inconveniencing others with the apartment space, and the patience has worn itself thin. I decided to stop doing that yesterday (the triggers have returned) – piling on the unsureness and guilt trip on myself. Able-bodied people should know automatically, especially after being told and educated and uhmmm it is visually obvious about the MS, hints: walker, wheelchair, sister helping me, moving to be near her. I am not sure what more proof is needed. I am done with guilt. I now think and say, deal with it, it is on you!

Do better.