LCSWR, CHP

It is CRAZY how time changes the way you look at things. There was a time when I could not have imagined being where I am today. A time so dark & scary that it literally took my breath away, crippling me with FEAR in a way only one’s threatened life could!

Depression can rob you of your whole life if you let it, anxiety can no doubt do the same. Gauchers Disease like any other chronic illness is known to have several side affects, one of the most debilitating believe it or not, can be depression.

Depression by clinical definition is “a mood disorder that causes a persistent feeling of sadness and loss of interest. It affects how you feel, think and behave and can lead to a variety of emotional and physical problems. You may have trouble doing normal day-to-day activities, and depression may make you feel as if life isn’t worth living.”

More than just a bout of the blues, depression isn’t a weakness, nor is it something that you can simply “snap out” of. I truly believe though, that depression and anxiety are challenges that we can learn to control and even transcend in our lives.

It was in my early 20’s that I was diagnosed with a case of what is referred to as “agitated depression.” A combination of both anxiety and depression. At the time I was unable to sleep most nights; despite my extreme fatigue I was often wide-awake crying on the phone to my mom at 3AM over how upset and afraid I was.

I suffered from extreme anxiety and obsessive thoughts about being sick and getting sicker. Every night I’d map out in my head the nearest hospital to where I lived “JUST IN CASE” so that I felt safe enough to actually close my eyes to rest.

My world truly felt unmanageable as I tried to cope with the life layed out in front of me. A life living with Gaucher’s Disease.

I was seven when they first discovered bruises on my body and an enlarged spleen. I was taken to specialists near and far in search of answers. My folks were told of all the disturbing possibilities early on. That this disease had the potential of robbing me of my full life expectancy, that there was no known cure and at the time no known treatment either. Needless to say, they were pretty devastated. As far as I was concerned, I remained kind of clueless at the tender age of 9.

It was in 1977 that I was finally diagnosed with Type1 Gaucher’s Disease affecting my spleen, liver and bones. My platelet counts were alarmingly low and this along with my big spleen; bruises, recurring infections and fatigue were the telltale signs.

Throughout my childhood I always felt a bit set apart from my friends, which is certainly cause for depression in a child. By the time I was 10, I had been through alot. Truth is most of the memories I have are of the inside of Schneider’s Children’s hospital. It is there where I sat amongst countless children who were suffering from life threatening forms of cancer and other harrowing diseases. The difference between those precious kids and myself, was that I was able to leave the hospital while they were left fighting for their lives.
These memories I believe will be etched in my mind forever.

I spent what felt like an eternity in that pediatric unit being poked and prodded to extreme. Each time I visited, along with other tests I had many vials of blood taken from me, once it was 26 in one shot!

The trauma of spinal taps in my backbone and chest had to have been one of the scariest times for me as a child. At 17, I was the sickest I had been. When a retinal hemorrhage was discovered behind my eye due to an extremely low platelet count, things took a turn. Most of my junior year of high school was spent in and out of the hospital enduring many blood transfusions. This ended finally with the removal of my 15-pound spleen. Written up in the medical journals as one of the biggest spleens doctors had seen at the time and what my surgeon described was as big as the hospital room sink….yikes!

The year was 1985.

Lying in that hospital bed the night before my surgery, looking down at my arms completely covered in broken blood vessels (a result of that dangerously low platelet count) I felt terrified and remember wondering whether I was going to die?

That night, as it turns out was the most defining moment of my entire life. It has been the catalyst for everything else I’ve done. It is the driving force behind fighting my fears and the disease itself. It is what helped me to understand that our mindset is our strongest tool to fight anything! In reframing my belief system my whole world began to make sense.

I was not like other kids; I have never felt like I belonged or that anyone could truly understand what I was going through. However, flipping a switch on my attitude changed all that. In fact, it has helped me to understand and to truly embrace that this disease is my gift in this lifetime!

I know this might sound odd to some, but I thank god for my Gauchers. It has been what grounds me in life. It is what taught me at an early age when most kids were out partying, living an illusion of immortality as most teenagers do, that life is precious! Because of my disease, I know that life can be taken from me and that embracing each day, as a blessing is the only way to live! Early on I adopted the slogan CARPE DIEM (SEIZE THE DAY) and this has become my motto for everything else I’ve done.

I recognize now that staying strong was the way I coped. I took it like a champ they told me, what other choice did I have? I stayed strong for my parents who were often quite beside themselves from worry. I often felt bad for my brother because so much of the focus seemed to be on me being sick. I stayed strong because there was no other option that I could see at my age.

Children naturally learn to adapt and endure whatever circumstances they are faced with. I learned years later that what I experienced was considered not only trauma but extreme trauma to the body. I went into shock around it. I unconsciously left my body mentally so that I didn’t have to be in the fear of what I was going through. This is very common in children faced with chronic or serious illness. This is common with anyone who is faced with circumstances that are frightening or somehow disturbing.

Embedded in my memory bank, as a child was my regular routine of checking in at the front desk of the Hematology Oncology unit at the children’s hospital. I remember waiting to be called for a finger stick to evaluate and monitor my blood levels before heading in to see my favorite doctor.

Dr.Shende was the incredibly kind and compassionate doctor who followed my case for YEARS, who would hold my hand and gently tell me in terms I could understand what was happening. By the time I was 11, I became pretty savvy at understanding my CBC or complete blood count and many of the other procedures I endured. As I’m sure many of you here today can relate to?
In many ways that hospital was where I grew up. It felt like the doctors and nurses were a part of my family and I am forever indebted to them for the gentle and exceptional way I was cared for. In a very odd way I felt safe there! It was a place that provided myself and my family a refuge from this scary unknown illness.

I was WAY too young to process all of the emotional impact that this would have on my life. Now looking back through my psychotherapist’s eye I understand all too well how this emotional trauma, along with the physical trauma has affected my emotional health and wellness tremendously. It has been what has helped to shape my entire life and is no doubt WHY I chose the profession that I did!

I was 24 when I had my first full-blown anxiety attack. Palpitations in my chest, feeling of doom, fear of being out of control and of dying. After that I started getting them pretty frequently for a span of two or more years. At the time I began a regime of anti-anxiety medication and a weekly meditation group. I started to learn that tuning into my breath was a way to slow down my racing thoughts and bring me back to the present moment, to a place that felt more manageable. For a while it helped to calm me some and allowed me to push through undergraduate school.

By this time I was about 3 years into my bi-weekly infusions of Ceredase (for those of you who don’t know, this was what it was called before its modification to Cerezyme several years later.) I was blessed to be one of the first 40 people in the United States to receive enzyme replacement therapy once the FDA approved it. This is because I met the criteria of being in critical need.
As I grew old enough to understand the complexities of this disease and the dangers I potentially faced. As Gaucher’s began to impact my liver functioning and challenge my ability to live a happy, carefree life my mind was overwhelmed with FEAR & ANGST!

until the MIRACLE of enzyme replacement therapy that is….

It was then that a real-life miracle unfolded before my eyes and literally helped to preserve my life. Over time Cerezyme began to reverse many of the symptoms and eventually brought me to a place of stable health. While working to accept the reality that I would have to adapt to a life where every other week for the rest of my life I would have to go for IV therapy, I was also in total gratitude for this gift!

I actually started to believe that miracles could happen sometimes.
I’d be lying if I said every day I showed up for treatment I was beaming with joy. I often questioned WHY ME and remained in a place of fear and powerlessness taking each treatment as it came while trying to adjust to a life where I was depending on it to survive!

Truth be told, dealing with a chronic illness and being imprisoned to “have” to show up for treatment in order to have that full life brought out anger, depression and frustration. Getting a permanent port in my chest at 21 years old where they could easily access my veins to make life easier was often suggested but ALWAYS refused by me. I just did not want to be reminded of this reality once I left the hospital.

I was at an age where I dreamt of meeting someone special, getting married and possibly having a family one-day and ALL I felt consumed with was how I would tell any potential life partner what felt like my deep dark scary secret??
The fear of never finding love, being accepted OR worse someone walking away from me out of his own fears crippled me at times. This took me years to work through and move past. Many, many years!

In 1998 I was a year into graduate school when I had another bout of illness not related to the Gaucher’s. This landed me in the hospital with temporary loss of the use of my legs. After another battery of tests, visits with MS specialists, Mri’s and Cat Scans to back it up, I was officially diagnosed with Multiple Sclerosis on top of having the Gauchers!

From what I understand, this was rare in the Gaucher’s community; according to the NIH there was one other case like mine in the country at the time.
Please note that about 6 yrs. later on a routine checkup with a new neurologist this astute doctor actually “undiagnosed” me with MS due to witnessing no change in the lesions found on my brain. Instead he diagnosed me with what are referred to as Basilar Migraines. A type of neurologically involved migraine that can bring on motor weakness and all sorts of visual disturbances mimicking some of the symptoms of MS.

Looking back on this now, there is no doubt in my mind that some of those moments when I felt SO extremely sick with what they thought was MS was more then likely brought on by stress, anxiety and some improper nutritional choices such as an overload of aspartame that is known to also mimic MS symptoms.

I choose to give this a mention because this was when I hit an all time low! I felt terrified, lost, hopeless and FULL of anxiety as well as depression. Focusing on the idea of what else could possibly go wrong in my 30 year old body with a heart full of dreams yet to be realized freaked me out! I was burdened with the thought that the challenge of living every day with a chronic illness was a reality that would never go away, and could potentially get worse.

At that time of what was believed to be an MS diagnosis I had reached a place of deep despair. I did not understand why this was happening again? I was so afraid I was going to be robbed of my life, of dying an unlived life. NO doubt the source of my ever-increasing mental distress.

That is until…..

I was able to discover an alternative to this misery and dread I was experiencing! Until I was able to see that I had some level of control over what felt like for so long a situation that was SO out of control!

Viktor Frankl said this “The last of the human freedoms is to choose one’s attitude in any given set of circumstances!”

Attitude, to me is more important than facts. It is more important than the past, than money, than circumstances, than failures, than successes and what other people think say or do. The remarkable thing is we have a choice every day regarding the attitude we will embrace for the day. We cannot change our past; we cannot change the fact that people will act a certain way. We cannot change the inevitable. They only thing we can do is play on the one string we have, and that’s our attitude….I am convinced more then ever that life is 10% what happens to me and 90% how I react to it.

And this is ultimately how I began to find my way out of the dark!

I started to believe in the POWER of thought and positive energy. I started to believe that if I just showed up for my doctors visits and treatments, did what I had to do and then left the hospital without feeding the awfulness and fear of having this disease, then I would feel as if I was truly living!

We all know that we are supposed to take care of our bodies physically. We know when to take our medications or supplements, go for our treatments, see our doctors and so forth BUT we often overlook the other parts of our humanity. Through this process I have learned that we are more then physical creatures and therefore it would be helpful if our minds and spirits were included in the equation!

Research indicates that body, mind and spirit are intimately connected and the health of one of these affects the health of the others. Some research even shows that things like positive beliefs, comfort gained from mindfulness and meditation can bring about a deeper sense of well being. I started to open up to the idea that this might not cure my illness BUT it could certainly help me to cope with it. And indeed it did!

We have all heard about how damaging STRESS can be to our bodies? Well there is great deal of validity to this notion. There is experimental evidence that states “passive emotions” such as suppression of anger; feelings of failure and grief suppress the immune system.

I believe that we can actually change parts of the body by dealing with how we feel. If we ignore our despair OR live in the despair, the body receives a “die” message. If we deal with our emotional pain and seek help, then the message shifts to “living is difficult but desirable.”

Not every illness can be overcome, but many people allow illness to affect their lives more then maybe they should. I believe that there is always a margin within which life can be lived with meaning and even with a certain measure of joy despite illness.

Armed with this awareness an entire new world opened up to me, bringing a sense of calm to my inner self and a sense of hope to my life. As I began to accept the reality that I would always have to rely on Western medicine for my treatment and monitoring of my disease, I began to yearn for a place that could help to bridge my two worlds. I needed a connection between my world of IV needles, MRI’S, CAT scans, white coats and cold hospital walls and my world of peaceful, safe, sacred places, mindfulness, positive thought and the deeper meaning of it all!

I began to dream of creating such a place; I wanted to gather like-minded people that shared a similar vision. This would be a place to heal others in a way that I had been healed. Much to my joyful realization, this place began to manifest. Other practitioners began to knock on our doors asking to join my beautiful business partner and I, each saying that the energy of the place is what drew them in. Despite my dark and scary past, I began to believe that anything was possible!

Years earlier I stumbled upon a poem that I fell in love with. It hung next to my bed during those darkest days as a beacon of hope for my future. Today I’m so proud to say it’s what inspired the name of our holistic center THE CENTER FOR SOULFUL LIVING as well as our core mission statement.

THE SOULFUL LIFE:
I don’t care how much knowledge you’ve acquired nor countries traveled. I want to know if you’ve given your soul a place to live.
Does your spine shiver over a wise poet’s words of grace?
Do you commune with nature, long & with tireless wonder?
Have you known despair and dared to step fully into your chamber of darkness, transforming your terror into that of a trusted friend?
Can you thrill over a star streaked sky of night, tenderly wipe away a young child’s tears or marvel over an artful masterpiece?
Are you a dreamer by day?
A lover of night?
Does your vast potential fill you with awe?
Do dreams of a peaceful world arouse you to ascending heights of hope?
Does the mystery of the universe excite you beyond measure, and can you feel the presence of a power greater then yourself in all of your affairs?
Then join me on a path of wonder and I’ll meet you in a field of INFINITE POSSIBILITIES!

So, our focus at the center is to provide unique and therapeutic services to the community in order to improve quality of life as well as inspire each person who crosses our threshold to reach their highest potential. It was out of my own deep struggle my life’s purpose was born.

I believe that THIS is possible for all of us.

I am aware that Gaucher’s affects us all a bit differently on a physical level.

There are those 3 types as we know. We know that some people are lucky enough to live A-symptomatic most of their lives before Gauchers rears it ugly head while others are taken way too soon. This is without a doubt a sobering thought and heart wrenching as well.

It’s not an easy road to embrace the pain, dis-ease and everything that goes along with it. It is no doubt enough to keep you feeling like you are stuck in the mud and spinning your wheels. Often just doing what you must do to get through the day!

I “GET” this, I’ve been there! Sometimes I’m still pulled there.

I struggle to find the balance of going for treatments, keeping up with doctors appointments, managing all the health insurance issues which can feel like a part time job in and of itself and the EXTRA amount of sleep I tend to need. Often one thing or another falls short but I have learned over the years to pay attention to what my body is telling me physically, emotionally and spiritually. Basically to slow it down or I WILL inevitably get sick!

Through my own experiences I have learned that there are other remedies to combat some of these mental challenges we face. There is much to be said of nutritional deficiencies and depression. Certain vitamins & minerals are known to assist in this area. Different types of therapy can assist with healing both anxiety & depression, yoga, most all forms of exercise that would be gentle to the areas most affected by the Gaucher’s, daily affirmations, spending time in nature as well as some sort of spiritual practice.

A meditation practice much like what we experienced at the start of this talk is truthfully what helps me most with my on-going bouts of anxiety. Simply time out to be present with your breath, the parts of your body that might be bringing you discomfort and your mind that might have trouble quieting down can truly help to HEAL much of what we battle with on a regular basis.

I leave you with this:
Perhaps you’ll consider joining me as WARRIORS OF THE HEART, for it is only in our courage to face all of life and it’s challenges with a tender heart that we can move through our resistance and experience TRUE joy & happiness!

—–

Alissa Schwartz, LCSWR, CHP is a licensed clinical psychotherapist and a certified hypnotherapist. Alissa’s PASSION & life’s work has been to help men & women of all ages find deeper meaning & purpose in their lives.

Alissa teaches others to mobilize their inner-strength and to uncover roadblocks that might be preventing them from living their most genuine and meaningful life.

Alissa believes in the POWER of positive thought and a strengths-based approach to life based on her own challenging life circumstances. With deep compassion and diverse clinical skills, Alissa is able to help others make the connection between their anxiety, depression & addictions and their disconnection from living in a way that is more aligned with their body, mind and spirit. In this way she is able to help others create a new powerful self-image and achieve optimum wellness, inner peace & a deeper sense of joy in life.

Ms. Schwartz holds a Masters in Social Work from Adelphi University and a Bachelor of Science degree in Health Administration from C.W. Post College. Alissa volunteers for the non -profit organization “Mission Be,” which teaches mindfulness and visualization to children in the public school system. This heart centered program empowers young people to accept and love themselves just as they are. These children are taught healthy coping strategies for managing life stressors as well as tools for long term success. Alissa actively serves on the “Mission Be” board as well!

Ms. Schwartz is a licensed Clinical Social Worker in the state of New York & co-founder and co-owner of THE HOLISTIC CENTER FOR SOULFUL LIVING.

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