Thursday, March 15, 2018

7th Inning Stretch

Here we are. It has been seven months since I began my recovery from my fourth back to back severe and treatment resistant depression. It is the longest span of time of relative health I have had in 4 ½ years. I never intended to count the time like this but it is so significant after what I have been through these past years. When you have been to hell and back and tried medication after medication, endured 4 psychiatric hospitalizations, intensive medical treatments which included ECT (electroconvulsive therapy), TMS (transcranial magnetic stimulation) and ketamine infusions, you do need to take a step back and recognize where you were and how far you have come. Time is important in this process. Seven months is significant. I have learned quite a bit in these past seven months and it doesn’t include thinking that all is better.

The process of recovery from major depression differs from person to person. During my briefer periods of recovery in between these past episodes, I was thankful and always felt that each one was the last. I felt too well to imagine anything obstructing that feeling. With this last episode, which was long, painful and haunting, I was cautiously optimistic. I tried a new medication from a class of drugs that I had never tried before. I had to stop my previous anti-depressant and wait two weeks before starting this new medication and began this process while hospitalized in July.

Once I began to feel better, think more clearly and feel more connected to people, I was hopeful but, again, cautious. With each month I have been able to really be “with” people, work and enjoy my life. At the same time, I do have struggles. If I do not sleep well for a couple of nights I become irritable and it can play out in a way that is certainly not fair to my husband and daughter. If I do not eat regularly I will not only get headaches but I will start to feel sad. I still have memory issues as a side effect of the ECT and sometimes I can laugh it off and others it is extremely frustrating and makes me feel angry. I am slightly traumatized by the experiences I had with ECT, TMS and the ketamine infusions. The ECT and TMS certainly helped and unfortunately the ketamine didn’t but the act of going through it all still frightens me when I think of it. It was terrifying and it was upsetting to be with and see so many other people struggling urgently with mental illness as these treatments are seen as the “last ditch” effort to ease someone’s symptoms and pain.

I have bad days as everyone else does and I have days that are “bad” but in a different way where my symptoms make themselves known. There is no cure for depression or anxiety. It is always there inside of me. I am working hard in therapy with a new therapist and this process brings up a lot of topics I have worked on in the past. It aggravates my anxiety and provokes in me anger, sadness and a bit of humility. It is hard. It is difficult. It is humbling. The positive of this experience has reminded me that I can feel better, even much better than when I was in a severe depression but there is always work to be done on myself. I’m not out of the woods and I have realized in the past seven months that I never will be. It is simply who I am and I am learning to accept it. I suffer from depression and anxiety and I own that. They will always be there in some form. I am not cured and I pray I do not have to endure another severe episode but I am doing everything in my power to care for myself. These past 7 months have provided me not only with better mental health but with more knowledge and understanding about myself. I will take this opportunity to stand up, raise my arms above my head and take that stretch.  Time is meaningful.

Friday, January 12, 2018

What Does it Mean to Be an Aunt to Young Adults?

My niece and nephew are my heroes and I do not think they have any clue about this. I was 23 when my niece was born and I fell instantly in love. The feelings were mutual and I couldn't be happier when she called me "Resee." Two and a half years later my nephew was born and he was full of mischief and love. I enjoyed visiting them when they were young and remember one visit where I became a yo-yo as they fought over playing with me. My sister-in-law actually had to time my playing with each one in order to ward off sibling war. It was hysterical. I felt such a connection to each one and watching them grow up has been not just a joy but an honor.

Each has his/her own personality, hopes and dreams but each is truly a wonderful human being. They both are loving, caring, enjoy spending time with family and friends and giving back to their community. I am full of awe as I watch them become adults. My niece is now almost 20 years old and a sophomore in college while my nephew is 17 years old and a senior in high school excited to begin college at his first choice in the fall. How and when did this all happen? Weren't we just circling around singing "ring around the rosie?" What the hell is happening?

The more I see them as adults I try not to yearn for the younger years when they fought over time with me and I felt such importance. Now they are busy as they should be. Growing up is partly about separating, developing oneself and learning and they are quite successful at this. I always say that my niece and nephew are rock stars and I stand by that. They are genuine human beings concerned with those around them and the world around them. They are hardest on themselves and actually over-work themselves in school. I do not think they realize that they are already wonderful in every way and do not need to really work at that.

I am always in amazement as I watch my 7 year old daughter, another hero of mine, grow up and cannot fathom her as a young adult, in fact I try not to even bring my mind to that place. I want her to stay seven, sassy and adorable forever. I obviously have different relationships with my niece and nephew especially since I was young, single and not responsible for anyone but myself when they were born. I consider myself extremely lucky to be a part of their lives. I am proud of my niece's love for her school and studies, even though I have no understanding when she tells me what she is working on in the lab; and I take such pleasure in my nephew's love of camp and everything that represents for him as I feel the same way about my own camp experience.

I cannot stop their growing up, just as I can't stop my daughter from growing and I feel so honored to call them "niece" and "nephew," such important people in my life. I am proud of each of them and I know I will always be along for the ride with them. My admiration of them will obviously continue and I cannot wait to see what this next chapter in entering adulthood will bring to them. Maybe now each will be clued in to my view of them and that it truly comes naturally. Love and appreciation for two amazing and impressive human beings abound.

Sunday, January 7, 2018

Social Security Disability, Medicare and Me

I applied for SSDI (Social Security Disability Insurance) in November of 2016 after my husband spoke with his brother and sister-in-law who are both lawyers. They believed, based on the previous years of employment change due to my depression, I was probably eligible for this benefit. When I looked online and read the requirements I was taken aback. I was apparently the poster child for the most suitable person to receive SSDI. I was scared, stunned and hopeful. My employment history changed dramatically over the course of more than 2 years:
  • I worked full-time managing a volunteer program to then working part-time in this role due to the severity of my illness
  • I was then laid off due to loss of funding for my position
  • I then contracted with a former employer for a few months working 10 hours per week
  • Funding ran out for that contracting position and I was then unable to work at all due to my illness
  • I have been working part-time in retail since March of 2016
I am now earning 99% less per month than what I made when I worked full-time managing the volunteer program.

I have paid into the Social Security system since the age of 14 and I knew I had a right to receive this benefit. I knew I fit the criteria for the employment and medical requirements. The application process is long and was not easy while I was still getting over one of my depressive episodes at the time. It required organization, good record keeping and the ability to gather many documents such as past tax returns, pay stubs, resume, dates of job starts and endings and professional titles. The first step was providing all of this employment history. It was a process of collecting, copying and sending. I triple checked everything I did as I was still not thinking clearly and had trouble focusing due to depression. It was a waiting game and I spent a lot of time checking my online application and calling often just to speak to a human being to be reassured that the process was progressing.

After a few months I received a packet requesting my medical information. Again, there was a lot of paperwork, not only for me but for my providers. My psychiatrist and therapist each had to complete a long form with my history, including dates of medication trials, hospitalizations, treatments, etc. I felt tremendous guilt that they had to do this, after all, I was the sick one who was once again needy for their help. Obviously, I was still not feeling very well. Of course, they did not hesitate in completing the forms and sent them back quickly. Again, there was more waiting and I actually didn't think about it very often as, statistically, most are initially denied SSDI. I knew I was eligible but I did not want to get my hopes up.

The money aspect of receiving SSDI was huge for my family. We were not in a good place, financially, and for those first years when I was severely ill and making less and less, we were in a financial place of burden and fear. No matter what, our lives were forever affected financially where there was no savings and there was a monthly issue of paying our bills. We lived modestly, only buying food, clothes for our daughter and paying for our mortgage and utilities. We accepted help from our families which felt sad and humiliating. Asking for financial help from our parents (myself and my husband) while we were in our early 40s felt like a bad dream. There was even a time when I thought we should sell our house and either downsize or rent (I never told my husband this). I sold any gold jewelry I had except for pieces passed down from my mother and grandmother. I wrote as much as I could for blogs that paid. We simply needed money.

The notification that I was approved for SSDI in May of 2017 felt like a dream. I read it over and over and started to cry. I couldn't speak and I kept crying. For all of the emotional, mental hell I was going through this was the light that my husband and I desperately needed. It would provide a bit more financial stability which we had not had for years. We were thrilled and I felt proud that I was benefitting from something that I actually paid into. It provided not just the concrete aide we needed but it was something positive to come from such a horrific experience of four back to back severe, treatment resistant depressive episodes.

I had to learn some new language in dealing with SSDI but it was beginning Medicare coverage that was and is truly complicated. My coverage began in November as required by the government. I had done much reading before and my husband did as well. We had to figure out what to do with my husband's health insurance through his work as Medicare would become my primary provider. There was a lot of back and forth, conflicting information and confusion while my husband communicated with his insurance liaison.

It's only been a couple of months and while I am still a bit confused by Medicare, it is beginning to come together for me. I had to stay under my husband's insurance through work as a secondary insurance for a few different reasons so I have to deal with 2 providers which is not easy. Each needs to communicate with the other and I need to stay on top of that to ensure it is actually happening. They have already set up what is called a "coordination of care" but that takes 60 plus days to begin so until then I have to complete claims from Medicare to my secondary insurance to pick up unpaid costs. It is time consuming and, again, confusing.

My first use of my Medicare coverage at a doctor's office was interesting. I checked in and told the woman that I now have Medicare as my primary provider. She asked for my Medicare card and while she was not speaking loudly, I felt slightly embarrassed. What would people think looking at me hearing that I receive health insurance through Medicare? Would they wonder what was wrong with me? What judgments might they have? After, I realized it was me who was wondering those things about myself. How did I get here? I was never one to have her life planned out while young but  never in a million years did I think I would be living with the help of SSDI, not able to work full-time in a professional position while receiving Medicare as my health insurance. Why would I have thought this 20 years ago?

Since that appointment I feel more comfortable and talk about having Medicare and SSDI quite openly, not feeling embarrassed or ashamed but proud that I was able to go through a difficult process to rightfully receive the benefits that I have paid into. It is still a bit confusing but I am thinking more clearly and can discuss issues with my husband and make the necessary calls to my providers for answers to my questions.

We continue to financially struggle and when we hear our friends going on fun vacations, we long for the day when we can do the same. All of the projects we want to get done in our home are on hold as they have been for years. We bought our house knowing we could easily take care of the cosmetic changes but that has not been possible. When I see events happening in the community that I'd like to attend, I look at the price and then throw the fliers away as it is not possible to pay. My husband and I rarely go out on "date" nights as going out to dinner and paying for a babysitter is too much. This list can go on but it is difficult to think of and put into print. Our lives forever changed when I first became severely ill in the fall of 2013 and while things are better now, financially, there is a long way to go for us to feel less burdened. I can't say when that will be or if it will be. All I can do now is be thankful for my current health and for the services I receive that provide some relief to my family.

Monday, December 25, 2017

My Family's Experience During and After Illness

I have been thinking about this as I have been recovering from my most recent severe depression. These are important questions that often get ignored as the focus is always on the "patient." The reality though is that while I am the identified patient and I was the one who was suffering in a way that no one else was, my husband and daughter struggled with being a part of our family where illness has been so prominent for the past 4 1/2 years.

**What happens to the caregivers of those with a mental illness? How does mental illness affect the immediate family of the one with the illness?**

My husband was constantly on guard and wanted to support me and most importantly our daughter. He was the one who did the physical activities with our daughter such as taking her to birthday parties, synagogue, play dates, etc. He was constantly "on" both physically and emotionally without any rest or break to the point of exhaustion.

Our daughter coped relatively well until last year in first grade. She exhibited extreme anger when she did not get her way at school and could not process disagreements for what they were and would become physical as her immediate response. These behaviors rarely occurred at home. We were constantly in meetings with the school counselor and the learning support specialist to navigate and help our daughter's difficulties. At the time it was not clear what the precipitant was and while we did think some of it was her responding to my constant illness, it was such a difference from her "normal" behavior, there was concern there was more to it. It was this year that we realized it was due to my being so ill and emotionally and physically detached from her. Her anger was her way of trying to cope.

So where does that leave us now, not only as individuals but as a family unit? We have always referred to ourselves as a "team" and that could not be more true. I think that those who have not experienced a direct experience with a family member with a mental illness, or any illness for that matter, may not understand the gravity of what happens during and after the family member's fight for health. During, there are constant issues for everyone, individually and as a family. Our family changed into individuals fighting for ourselves and each other, to be well and to hold on to that. My husband was tortured by my being so ill and felt extremely helpless. He watched me fade away in every possible way: his love, his best friend...his partner for life. My daughter desperately wanted to connect to me and there was not much she could do to feel that connection as I simply could not return it in the way I wanted to or she wished for. Our house felt like a pressure cooker, ready to explode at any moment.

It's been a few months since I began to feel better from my most recent episode and I feel better than I have in years. I think more clearly than I have in my entire life. I am re-connected to my daughter in a physical and emotional way that I missed more than anything. She actually emotionally regressed a bit in August just as I was becoming more emotionally present and it is clear that she was scared. She must have been worried if this would last.

My husband and I are in a process of re-connecting. Although I've been the ill one, I now feel like I'm higher up than he is on the scale of feeling well. He has been seeing a therapist for what he describes as his "PTSD." He is still trying to take in my health and not panic if I have a bad day, even though he fully understands that we all have bad days. He is in a word...terrified. He has watched me become ill, severely ill, four times within the past 4 1/2 years and therefore is completely terrified as there could be another episode, so I understand that he has every right to feel this terror. While I do not wake up each morning wondering when or if I will become ill again and am able to be in my life, he is not there yet. If I am irritable, he asks what's going on and I have to work on not snapping at him telling him, I am simply irritable...I am not becoming sick again. People feel irritable at times. It happens. I know I must work on my patience and respect his working through. I cannot even imagine what this has been like for him as my "caregiver."

Not everyone may know or understand this part of recovery and how it is not simply about the patient. I realize my illness did not only affect my husband and daughter but also our family and friends who wanted to help. I chose to focus on my husband and daughter here as this has been our 24 hour a day constant existence. I hope that others can take in how much of recovery involves the family system and is certainly not neat and simple. When I wrote in July, "Welcome Home, You're All Better?" my focus was on the mere fact that just because I was discharged from the hospital, it by no means inferred that I was all better. This is an ongoing process that may take several more months.

I do hope that others may have a better understanding of how my family is experiencing this process and, yes, we are almost entirely focused on ourselves. Some may say that we are too narrowly focused on ourselves and not necessarily spending more time with other people in our life who are very important to us. All I can say is that this is working for us and we must continue to heal together. Honestly, we have been to hell and back and not only are we entitled to time together, we simply deserve it.

Sunday, October 29, 2017

The 11 Miracles of My First Jewish Women’s Retreat

It was two years ago when I planned to go to my synagogue’s women’s retreat and I had to cancel due to treatments for my depression. I was devastated. I was so excited that my time had come to attend this women’s weekend away.

In one word, I can sum up the experience I had this past weekend: miracles. There were so many miracles it is difficult for me to begin. I met a group of women, most of whom I did not know. I was given the gift of connecting and getting to know new people in my life. There were 14 of us, including my amazing close friend, our Rabbi and leader.

1.     The first miracle was meeting a woman who I carpooled with, whom I had heard of but never met. I instantly felt a warmth about her that was so inviting and we had non-stop conversations the entire ride.

2.     The next miracle was meeting these women, doing fun icebreakers that you do when you begin a retreat. I learned names and was proud of myself for remembering them so easily (I do have lingering memory problems from ECT-electroconvulsive therapy).

3.     The following miracle was meal times. While the food was excellent and we all enjoyed it, it was a time to chat, laugh and continue to get to know one another. Each of us never sat in the same place which helped to foster our relationships. I enjoyed that time immensely.

4.     The praying that we did together, as one community, was not only filled with warmth and feeling, it was personal. I felt more connected to myself than I ever have in my life. I am not exaggerating at all. I sang as part of this amazing community of women and prayed with them and felt both completely connected to them while at the same time, connected to myself. It was a true miracle to experience this.

5.     I believe there is a blessing in sharing oneself with another human being but I also believe there is a blessing and an emotional wonder that occurs when women share themselves with each other. The strength of 14 women sitting in a room together, whether eating, praying, singing, laughing, hugging, etc. is a miracle, not only in its occurrence but in the actual experience of it.

6.     Shabbat afternoon we had free time with a few options of activities, if interested. There was a quiet hike option and a talking hike option. While I thought the quiet hike option would be nice, I felt it was not what I needed. I had been so talkative already during the retreat and I did not want to hold back! The group of us walked, talked, shared and laughed and it was wondrous. The perfect weather along with the beautiful foliage added a natural element that was not lost on us. More connections were made between us and amongst us and it was indeed another miracle.

7.     By Havdalah on Saturday night, our group was quite solidified. Arm in arm, we did Havdalah in the darkness, led by the light of the candle and I was tearful. These women became my weekend family and it happened so quickly. I thought how beautiful the moment was but also how incredible it was and how powerful women are in terms of connecting to one another. I felt blessed, again, and acknowledged this miracle in its moment.

8.     The miracle of fire came on Saturday night when we had our bonfire (and smores, of course!). We sang songs, mesmerized by the flames of the fire and it was fun and a wonderful way to share our last night together.

9.     Sunday consisted of praying, using spirituality, as we had been, as an individual and as part of a community. It also consisted of reviewing and wrapping up this gift of a retreat. We shared more, questioned one another, exchanged thoughts, laughed and cried. It was a miracle to feel complete as we marked the end of the weekend, not just as a group but as individuals. I could feel it and I am sure the others could as well.

10.  As I hugged each woman goodbye, I smiled and felt connected, held and excited to see them again as we had already begun planning future women’s groups for study and comradery at our synagogue. I thought of how it is usually sad to say goodbye after experiencing something meaningful, but I felt at peace, quiet and whole. I felt ready to return to my husband and daughter and the chaos that is life. That was just another miracle—the ability to be able to move on because of the experience I had. I was given strength and could use that strength to move forward.

11. The miracle that was ongoing from the moment I arrived at the retreat center was my presence. I do not mean that my body was physically there for the weekend, rather the fact that I was present, as in my mind was centered and able to accept and experience each aspect of the weekend. I was focused, thinking clearly and emotionally open to anything. Prior to this weekend, I do not believe I have ever experienced this in my life.

My physical body endured too much these past few years of intense illness: ECT (electroconvulsive therapy), TMS (transcranial magnetic stimulation), medication trials and ketamine infusions. My body continues to cope with memory issues and word gathering difficulties due to the ECT. The fatigue, nausea and other physical side effects and consequences of these treatments emptied my body and not in a positive way. This weekend fed me and filled me. My slightly broken body was given something that has been missing for some time. My stomach, heart, legs, neck and head were given breath, love, peace and ease and my body has not had any of these internally for years. One weekend made this happen. My body was healed in a way I did not even know was possible.

The significance of all that I gained over this weekend is not lost on me. This will be the lingering (and I hope everlasting) miracle of this significant weekend. The remarkable women I connected with, my dear friend who led us safely and steadily -- and me – these are the miracles that I hold as I reflect in this moment. May each of these weekend retreat miracles stay with me, in my heart and in my soul.